This transcript is machine generated and was not proof read.
We are here in Autism NZ and we’re here to speak to Chanelle. She’s the autistic advisor. Welcome to this podcast and appreciate your time. I know it’s a huge thing to ask. You still managed to give me some time for this.
So first, who is Chanelle?
I am one of the autistic advisors here. I also work in research and I’m an author and illustrator. I’m also autistic and I have ADHD and pathological Demand avoidance.
Can you give me some background around what you do, being autimented, as autistic advisor?
Oh, yes. So my role as an Autistic advisor involves giving education presentations to employers and organizations, making resources, depending on what the community needs. Sometimes there’ll be some events that I’ll attend and help with. I manage all of our Lego, which is fun. Yeah.
Working on research, doing data analysis at the moment. Yeah. And then just kind of helping out where I’m needed. So sometimes we’ll have clients come through outreach and they need an autistic perspective. So that would be my role to help that.
All right. So giving autistic perspective on any aspects that relates to autistic and said work, right?
Yeah. If we get questions from clients or parents and they just have a question that our outreach coordinators maybe don’t have the knowledge about because they haven’t lived as an autistic person, they might ask me and get my perspective on things and then we can give that to the clients who are needing help.
I’ve read your book. I actually brought your book here. I found out that you were diagnosed when you’re already 21 years old. So I just want to understand how are you feeling back then before the diagnosis?
I really struggled before getting my diagnosis. My mental health was very, very bad. So when I got my diagnosis, it actually ended up saving my life because I was very suicidal at the time. I’d been trying to take my life quite a lot.
And then I got my diagnosis and it just explained everything. And I was able to use the right tools to help myself. I was able to find people who were similar to me. I was able to get work for the first time because I had the right accommodations. Yeah, my diagnosis was very much a relief for that.
So when did you start feeling that something is not quite right in your emotion?
I always felt different and I got bullied a lot. I had lots of very negative labels. I knew I didn’t fit in. So, I mean, I guess I was struggling for a long time, but also I moved to New Zealand when I was nine, which was very hard as an undiagnosed autistic person who struggles with change. And so that alone was hard.
And then I had lost a few family members and I think it was around twelve years old. I was not coping. And then I went to college and again, that’s a very huge change. And even in that space, I was struggling to fit in anywhere, still getting bullied. So around 15 years old is when I became clinically depressed.
Whereabouts you’re from originally?
Were you diagnosed as ADHD as well before, or it’s just like I saw an article somewhere, I just remember and seems like the behavior or the traits of the person with ADHD and autism are quite the same. It will confuse me if I don’t know anything about which I don’t know anything about it.
My ADHD. I was assessed when I was four, but the psychiatrist decided not to diagnose me, and instead I was put into a gifted kids program. I was pulled out of school and I was homeschooled. And so because I was homeschooled, no one was really having an issue with my behaviors, so we didn’t pursue a diagnosis. So I got my ADHD diagnosis formally when I was 22. So a year after my autism diagnosis? Almost exactly. It was like one week after being a year.
I know a friend who has a son with ADHD, and they’re having medications. So how does it feel for you without any medications at all?
I’ve got the medication, yes. So I was diagnosed at 22, and then I spent a year trying to get medication. It’s really hard to access psychiatrists in New Zealand. They’re just not available and very expensive. And so when I finally got in with a psychiatrist to get my medication, honestly, it was great.
I think there’s a lot of stigma around medication and that it’s being used to make the child normal, when actually ADHD medication works by bringing our dopamine levels up to what is normal in other people, and dopamine gives us motivation and happiness.
So when I started my dopamine, the first thing I noticed was that my suicidal ideation stopped. Gone. It was great, but it did mean that the medication showed me just how much I was struggling when I wasn’t medicated, which was quite hard to adjust to because it was like, oh, my life is so much harder than what other people are having.
But I think when you actually have something to compare it to, it’s kind of upsetting. I don’t know if you are used to being low income, for example, that’s fine, you can manage that. But then if you were to experience being a millionaire, suddenly being low income is very hard to deal with.
It’s like that where I saw how much easier things were with the medication, and now I know how hard my life is without it, and it makes it harder to manage without the medication for your book.
So what made you decide, like, all right, I’m going to write a book about autism, and this is it. I want to spread out the news for other people to be aware about as well in this space.
The book was actually an accident. I wrote the book for myself because I mean, I’d been diagnosed at 21, I keep hitting my mic. I’m sorry. I got diagnosed at 21, and that meant that I had to reprocess my entire life to make sense of it. And I was learning about autism and what that meant and how that was impacting my life.
And it was a lot to think about and there was a lot in my mind. And so I wrote the book and did the illustrations as a way of processing it and just putting it down somewhere in some kind of order so that it was just organized to me. And at the time that I was writing the book, I was a client here at Autumn, New Zealand and one of my now colleagues sent screenshots to Verb Wellington. And 2 hours later, I had a publisher calling me, asking to have my book. And at first, I didn’t think anyone would want to read it.
And so I spent the whole first phone call with my publisher talking about self-publishing and how to self-publish because I wasn’t really interested, but because she explained it all to me, I was like, okay, fine. You can have a book. So yeah, I signed with my publishers and they released the book and next thing I knew I was a bestselling author and it’s been really strange.
So how do you feel about it? This is a huge change in your life as well, like having to not having to want to self publish versus someone will be publishing it for you and suddenly a Chanelle.
Yeah, I mean, never intending on publishing. I thought if I did publish only like 100 people would want it so yeah, it’s really surreal having so many people read my book. Also really weird being recognized. Yeah. But I think at the same time it’s also been really rewarding.
I love helping people and so I love that this book has been able to help people and put a bit more of a positive light on things. I love that I have met young people who have read my book who are just so stoked to meet another autistic person. I love that I get to be someone who can advocate for these young people.
Yeah. I had someone give feedback saying that I made it mainstream to say I’m autistic and that they were really happy about that because they could say it and it didn’t matter because I mean, that’s the title of the book. I love that and people saying that it gave them a voice. Yeah. That for me is really rewarding. And also I get to do public speaking and I love public speaking.
Do you do some preparations before you do public speaking? Because you are going to be exposing yourself with a huge number of people audience.
The first ones that I did were definitely a shock. Like I enjoy public speaking. Right. The first ones I went to though, were with young people. And I spoke to a group of 1112 year olds and they had a lot of questions. It was great. But I had some neurodivergent, eleven year old, twelve year olds come up to me afterwards who talked about being suicidal.
And I was just in shock because I was like, I know the issues for Neurodivergent people are so deep and so big and it would be really hard to fix them. But why are they so bad that our eleven and twelve year old Neurodivergent kids are feeling this way? And how do I even begin to fix that? So that was a lot, a big shock, a lot to take in mentally.
But after that, I think once I, it took me a while to recover from that one. But after that, I think it’s given me more strength to keep doing the talks. A lot of my talks are with teachers, which I think is where I need to be because that’s where it’s going to be impacting our young people.
If our teachers know more and can be more positive about it, at least those kids are going to be in a space that is affirming for them. Right? Yeah, there’s a side. Like we do need to educate more professionals. We need to educate parents so that they have more of a positive understanding of it than a negative one.
And one thing I’ve noticed is a lot of teachers are not they probably have an idea about autism, but they are not fully aware or fully trained, if that’s the term that I can use. Fully trained and to handle children, neurodiverse children.
And I’ve seen one in the news, like one in three autistic kids are being stood down from school because of that. So I think it’s more of like the book, this one, when I showed this one to my wife and she said like, oh, it makes more sense now. And a lot of the information in here is very easily digestible.
When we had our diagnosis for my son back at PH B, all of the terms that they are saying is technical and they’re talking about this and about that. And a lot of them it’s like someone is speaking in Chinese to a Filipino person. Like, okay, what do you mean about this? So most of the things that we’ve done is more on research as well.
And this one made it far more easier for us to understand what you mean about, let’s say, steaming, what you mean about implying. I saw that implying and it’s so very helpful if you have an upcoming book, ADHD. So is it just a follow up of this I am autistic book or.
So it, it looks pretty much the same as that. But it’s obviously about ADHD. It’s called this is ADHD and it is designed slightly differently in terms of the coloring because splatters of color, like that would be really distracting for ADHD people and harder to read. So we ended up using ribbons of color instead.
I was telling my boss about this, and then she said, I already have that book. And then I’m preparing that book for my nephew. She has an autistic nephew, and she found it like it’s going to be a very useful reference for her nephew as well.
Can we learn about this book and not just one question first? One question at a time. I learned that from here.
So I think the thing that’s been really good about this book is that a lot of people know the what when it comes to autism. So they know that we’re blunt, they know that we’re literal, they know that we stem, but they don’t know the why. And I think that’s what’s causing some of the downfall. Like, teachers know autistic kids are going to have meltdowns, but they don’t necessarily understand why.
Why is this kid having a meltdown? Why is he acting in this way? Why is this kid flapping their hands? So this book kind of gives more of the why. It lets you know what’s actually going through the autistic person’s mind, and that’s what’s going to help you understand and empathize with what they’re dealing with.
And so you’re not seeing them as a misbehaving child or overreacting to something really small like a meltdown. Could be that they’ve been dealing with intense stimulation all day long and they’re not just trying to get their way and throw a tantrum.
And the communication side of things, like we’re not intentionally being rude, it comes down to the way you’re interpreting the language. And so having the why and that context is really important, and I think that’s what I do in there.
Will it have the same narrative in terms of the ADHD book?
How to understand the ADHD, one I had a little bit of fun with. Yes, it is the same idea, and it will explain the context behind different traits. When it comes to ADHD, it is more well known and more accepted, but well, people think it is, but there’s actually a lot more to it.
Like, people hear ADHD and they think, impulsive hyperactive, but there’s so much more to it. I struggled to keep it short for the ADHD. There was so much more to say. But also with the ADHD book, there’s a lot that comes into like, brain chemicals, and I’m so interested in it. And so, yeah, I had a lot of fun trying to explain the more sciency things in a way that people are going to understand. Hi. Thank you.
No worries. Yeah, I’m just making sure it’s still sorry. Yeah, take a time.
What’s the term ADHD means Attention Deficit Hyperactivity Disorder.
What’s the difference of that with Add?
So Add is not a label that’s diagnosed anymore. So that used to be a diagnosis because obviously ADHD has hyperactive in it. So Add was the type of ADHD that doesn’t involve hyperactivity, but now they are combined and instead you’ll have ADHD hyperactive, impulsive type or inattentive type ADHD or combined ADHD.
So inattentive ADHD is what would have previously been called Add. Inattentive ADHD is a lot of the struggle happens internally and there might be an element of hyperactivity and they might talk really fast, but, yeah, it’s more internal and the person can end up kind of almost in a paralysis. And they seem very lazy because they’re just not doing anything. But it’s all internal, internal.
You mentioned about the differences of that and it’s kind of like the Asperger’s now part of autism. I heard, I did mention one time to my wife, someone calling someone with Asperger’s like high functioning, high functioning.
But my wife corrected me like, we no longer use that, don’t say that. And it’s just autism. That’s it, no more, nothing else. So what do you think is the difference? Or why do you this that has mislabeled?
Yeah, so there’s a few things behind that. I mean, partly asperger well. It has negative history to it because Hans Asperger was a Nazi and was basically separating autistic people by the ones who were useful in the capitalist society and the ones who were not. That’s the only separation. There basically the only difference that’s sorry, that’s my phone.
The only difference between Asperger’s and autism at the time was that people with Asperger’s could talk, basically. So they got combined into just autism. And we had people using high functioning and low functioning for a while. These terms are not very correct. So high functioning would be someone like me, I can talk, I can present in a way that’s comfortable for other people, but it’s not representative of my daily life and my struggles. I can’t cook a meal by myself, I can’t clean my room sometimes I can’t talk.
But I would be considered high functioning. And then you have people who would be considered low functioning, maybe because they can’t talk, because they need a bit more support, but they might have degrees, they might be doing a lot more than a high functioning person would be. And so the autistic community has been kind of screaming out like, we don’t want these labels because they’re incorrect.
It’s more like high masking or high functioning is just how you perceive my autism rather than how I’m experiencing it. So we prefer to use support needs, so high support needs or low support needs rather than functioning labels.
We are in the misconception about autism. So what are the main misconceptions about autism that you have figured out or someone might have or experienced?
Perhaps there are a few everyone’s a little bit autistic, I think when people say that, they’re thinking that they’re being sympathetic or nice to people, but it’s actually very invalidating because it’s like, oh no, you’re fine, because we’re all a little bit autistic.
It’s like kind of brushing off someone’s difficulties that they’re having. It’s also just not correct, because the autism spectrum is not linear. It is more like a circle. And every autistic person has different experiences with different traits, and those traits can fluctuate over time, and you’re either on that spectrum or you’re not.
Autistic traits are human traits, so anyone can experience them. They’re not just like, only autistic people can experience these. This no, that’s not how it works. So there’s that one, then there’s the only boys can be autistic. Not true. I think part of the reason we have that misconception is because the diagnostic criteria that we have for autism is based on eight year old boys, which makes it very hard for females to get diagnosed, and females often get misdiagnosed also because we present very differently to little boys. So there’s that.
A lot of people think that autistic people don’t know right from wrong. And so you’ll have a lot of people saying, oh, he just doesn’t understand. He does. Autistic people understand a lot more than you realize. Even nonverbal autistic people, they still understand, and they’re still trying to communicate. It’s just going to be in a different way.
Another thing is that people think that intellectual or a learning disability or intellectual disability is a part of autism, but it’s not. It’s a separate thing that occurs in some autistic people. Right.
That’s about cognitive ability, its ability to learn or perceive.
Yeah. There’s a like IQ, I suppose. Yeah. The intellectual disability or learning disability is what the community prefers to call it. Yeah. It’s not a part of autism. It’s something that occurs alongside it. Yeah. And then I don’t really know. There’s a lot of them. I just can’t think of them right now. The misconceptions around it.
Someone mentioned to you you don’t look autistic. Similarly with Dana, with her daughter as well. Your daughter doesn’t look autistic. And I told that to my wife, and she was like, what does an autistic person look like? Is there a model? Like, maybe we should find out.
I do hear that one quite a bit. You don’t look autistic. I had a psychiatrist say to me once, it’s such a silly statement because it’s like, what? Have you developed X ray vision?
Can you see my brain? Sorry. I often respond to people, well, you don’t look neurotypical. And then I let them get offended by it and watch them trying to figure out why they’re offended by it. Because that statement, if you don’t look autistic, it is a very ableist statement. Right.
Have you seen them being able to get offended?
Have you seen that? I’ve seen a few people get offended by it.
But it does make them think I do still explain it to them, and I explain autism doesn’t look particular way. Do you want me rocking in a corner, flapping my hands all the time? We still have lives we still have to do things.
When I had a few of my episodes early on and I mentioned to one parent, like, we are all on the spectrum, which is incorrect. Like my wife said, no, it’s either you’re autistic or you’re not. And definitely you’re not autistic.
She was telling me it was a misconception on my part, which is very careless and I was called out by an unauthorized person, which is cool as well. No harm done. I think I made harm when someone heard it.
But again, as parents new to this space, we’re still trying to learn about a lot of stuff and a lot of things and words that we should use that won’t offend, especially autistic person, because it’s very literal. So are you learning about metaphors so at least you won’t get confused with the neurotypical world?
Yeah, I mean, firstly, navigating that space as a parent of an autistic person, it’s got to be challenging. Like you’re coming into a space where people are very black and white, right, and they’re going to tell you if you’re using the wrong words. And often that can come across as an attack when it’s just like, we’re really tired of hearing all the negative language and we’re not trying to be mean in regards to metaphors.
I’m trying to learn some of them. I definitely still get very confused by some that I hear. I mean, once I’ve learned a metaphor, I’ve learned it sometimes. I might still not understand it in the context, but it’s just kind of amusing when they happen.
Like we had a meeting once and someone said, let’s have a chin wag. And I’m like, what the heck is that? I still haven’t learnt it. I don’t know what that is. But there was another one that was we’re talking about the ability to think laterally. I was like, what? Ability to think sideways? Like, how do you think laterally? I don’t understand. And so I actually started reading up on it and it’s to do with dogs tilting their heads.
Yeah. So I mean, when there’s a metaphor I don’t understand, I do get someone to explain it to me. But I think it’s not metaphors that I have the hard time with. It’s implications because people don’t use metaphors in everyday language, right? But implications are in everything. So many people don’t realize how much they’re implying.
Like say I get up from my desk and go, oh, I want to get a glass of water. If the person next to me says, oh, can you bring me a glass? I don’t know what they want in the glass. Yeah. So that kind of thing happens all the time. So many miscommunications that way because I’m like, what do you actually want? Because you haven’t said. The full scent makes sense.
If you’re in a group of neurotypical people and they’re playing jokes or saying jokes, are you able to confirm if it’s a joke? Or it’s kind of like being serious.
I struggled with that so much until I got diagnosed. I always just thought people were being really mean all the time. I didn’t understand that they were joking. And then I got diagnosed, and I have some friends who are very sarcastic, and I didn’t know that they were being sarcastic until I got diagnosed.
And then when they realized, they’re like, oh, my goodness. I’m so sorry, Chanelle. We’ve been saying all these things that are really offensive, and I didn’t know. And so now when I’m with those people, when they are joking or being sarcastic, they’ll realize, oh, Chanel’s autistic. She doesn’t understand. And then they’ll tell me, they’re like, oh, I’m being sarcastic. It’s fine.
I met someone who’s autistic as well. I check with him. Like, if I will be telling you a joke, would you consider me telling you first that I’m going to tell you a joke versus telling it straight up? No, you have to tell me. All right. So there’s no longer punchline because I’m going to tell you a joke, which means I’m expecting you to laugh.
Yeah, I think I like it when people tell me afterwards. Like, if you tell me beforehand, then I’m like expecting the joke. But if you tell me, if you tell the joke and then go, oh, it was a joke. Oh, that’s actually really funny. I find that works. I think people don’t like telling you when it’s a joke because then it’s like, well, it’s not fun anymore because now you have to tell you, but it’s still funny.
Do you hate surprises? Like gifts?
Like, it’s box on the joke side of things. The other thing with that is, like, people don’t realize when I’m joking. It’s kind of easy. Anyway, gifts? No, I like gifts. If I don’t have to open them in front of people, I really struggle with the reaction.
Yeah. Because I don’t know how I’m supposed to react to the gift, and I always get it wrong, but I’ve also my whole life, I don’t know why this is what I do, but if I open a gift and it’s a clothing item, I put it on immediately.
If I get multiple clothing items, I put them all on at the same time. It was quite funny for Christmas because my brother’s girlfriend got me this top, and I opened my gift and immediately put it on before everyone had finished opening the gift. So my brother was like, oh, where’s the top that you got her? And she was like, she’s wearing it.
That’s what they’re supposed to be. Right?
Well, I think part of the reason I do it was because I couldn’t figure out how I was supposed to react to show that I appreciated it. And so I figured if I put it on, they know I like it. So that’s what I did.
Going back to that diagnosis for you. So what can we say to those who haven’t been diagnosed but they kind of feel something is not quite right? Is there a cue or a trait that they need to find out so they know how to navigate it?
I think it’s definitely something that takes people a long time to realize in childhood. It’s definitely easier to notice if you know what to look for. So I grew up I lived with a family for a while who had some kids, if I’m pretty sure, autistic. But this kid would walk on his toes all the time. He had to have his blanket very perfectly on his neck, wouldn’t understand communication.
So his dad would be like, oh, this is your brother’s dinner, and this is yours. And he would take his. And then the dad would be like, well, this is your brother’s dinner. And you’re like, okay, can you give this to your brother? Oh, okay. Yeah. So, like, I mean, you can kind of pick up on it if you know what to look for.
When it comes to adults, particularly females, a lot of us are hiding it a bit better, and it becomes a bit harder then. So what happens for a lot of adults who are realizing they’re autistic is they kind of go through this really long process of looking into it, reading up on it, doing heaps of screening tools, going, oh, am I autistic? And then they’ll go, oh, no, I’m definitely not autistic. And they’ll be like, oh, no, I am.
And then there’ll be denial, like, oh, no, I’m mocking the autistic community by thinking I’m autistic. And then eventually they’ll get to a point where they’re like, okay, I’m autistic, and they’ll self diagnose. And that’s after a long time, a lot of people go through a very long process for that, and it can be very hard to access an assessment.
So in the autistic community, most of us consider self diagnosis to be valid because it can be very difficult to get an assessment. It can be difficult to find a professional who knows about female autism or adult autism. So, yeah, there’s just a lot to it.
Then there’s some mental health diagnoses that are commonly misdiagnosed in autistic people. So, like, borderline personality disorder is one that I received a borderline personality personality disorder diagnosis before I got my autism diagnosis. Yeah, I mean, there’s a few things, like, if you have sensory processing disorder, ADHD, OCD, and VPD, you’re probably just autistic.
When it comes to you doing the masking. When did you realize, like, I feel like I’m masking because I’m putting too much effort now with, like, trying to fit in.
The thing is, like, I thought everyone was doing it, so it wasn’t something I question. I would spend every single social interaction monitoring how much eye contact I was giving, monitoring the tone of my voice, monitoring the order of the words coming out of my mouth, what. Facial expressions I’m using, what emotion I’m portraying, what gestures I’m using, how much I’m moving, and what the vibe of the group is.
What emotion are they expressing, what are the social rules in the situation? It was exhausting and I could barely listen to anyone who was talking, but I thought everyone was doing it. And so I was like, well, no one talks about this, so I’m not going to talk about it. And I would get so exhausted from it that I slowly learned that mimicking was easier. I’ve been doing that most of my life, to be fair.
But mimicking would mean that I would copy the person’s accent, I would copy their mannerisms, I would copy the patterns of their speech and people would notice that I was picking up their mannerisms or their accent.
Sometimes they’d think I was mocking them. I didn’t realize that that was me masking until I got diagnosed. And I was like, oh wait, you’re not all sitting there like consciously making all of these decisions about what your body and your mouth is doing the whole time. So yeah, once I realized that I was like, okay, well, since you are not doing that, I’m going to try and stop.
And so I’ve spent the last three years just learning how to be me in social situations and learning how to not try and do everything that Reynolds doing. The mimicking still happens. I do still copy people’s accents without realizing, which I don’t mind. It’s kind of amusing. I’ll do radio interviews and I’ll suddenly have a British accent or something. That’s kind of funny, that’s cool.
That’s a skill, by the way. And it’s a difficult skill. You’re trying to pretend to be someone you’re not. In terms of support system, you were diagnosed at 21, so obviously most of the support are no longer like that no longer apply to you.
Yeah, so when I got diagnosed at 21, I was lucky that I had a psychiatrist who was really knowledgeable psychologist, was really knowledgeable in female autism. And so she supported me to get a needs assessment done through the local NASC. And when we didn’t agree with the result of that assessment, she helped me challenge it.
So I ended up getting 5 hours of support a week to help with cooking and cleaning. So that was one thing that helped. The other thing is just knowing that I was autistic allowed me to find the things that I needed to help myself.
So because I had been struggling with my mental health, depression, whatever, usually what you’re told to do is go out more, pick up more hobbies, spend more time with people. As an autistic person, that was burning me out because that’s a lot of stimulation, it’s a lot of masking; it’s a lot of energy to use.
So I was getting overstimulated. I was just making myself worse and putting myself in a state of meltdown. So when I got my diagnosis, I was able to go, well, actually going out and doing these things is making me worse.
What I actually need is to spend more time with less stimulation. So I was able to do that, and it’s helped a lot. It’s also meant that I could recognize that when I’m in a meltdown, I don’t need to go try die. I need to go and sit under my weighted blanket or have played with some Lego or something, and that’s working really well. And then, I guess also being able to explain to people that I communicate differently, I understand things differently, has meant that there’s fewer miscommunications in my relationships.
We’re able to be more understanding of each other with my family. For example, my mum would get really offended if I didn’t respond to everything she said. And since I got diagnosed, we realized, oh, I’m not responding. Not because I’m ignoring you, but because I just genuinely don’t have a response to what you’re saying, or I can’t talk right now, so I’m not responding. And it’s not like me being rude or hateful. It’s just I genuinely don’t have anything.
To say, or I can’t say anything that makes sense. I think it’s the neurotypical parent of me. Like, if I told you something, you have to respond. Like, is it a yes or a no? Or even just a nod will suffice.
And I think it’s just like being acknowledged. Like, hey, can you maybe clean up your room? And then suddenly it’s quiet and no one is responding.
I think it’s just a neurotypical kind of thing that you’re expecting something in return for communication to be, like, two ways rather than me saying it, and then I don’t get a response to it.
Yeah, I think some of the ones I had with that would be, like people would be asking the wrong question. So my support worker, for example, she said, do you want to put the chicken in the oven before I arrive?
I texted her back, no, because I don’t want to. I still did it. I didn’t want to, but I needed to do it, so I still did it. She arrived. She said, oh, we should probably put the chicken in the oven. I’m like, what do you mean?
I’ve already done it. She’s like, well, you said no. I’m like, yeah, because you asked me if I want to. I don’t want to.
How’s the family?
Yeah, my family life, we had fallen apart. I had no contact with my mom before my diagnosis. Things were just really bad between us. And then I got my diagnosis, and it just helped a lot of us actually understood, all of us understand what was actually going on and why there was so much hurt between us.
And we’re able to actually talk through that. And we have a much better relationship now, and it’s really good, especially realizing the pathological demand avoidance side of things. I was a very stubborn child because of the pathological demand avoidance.
So anytime my parents would tell me to do something, I would just turn into a little bit of a demon. Honestly, very mad and angry anytime I was told to do anything. But now that we have that understanding, well, my mom’s able to talk to me in a way that works and she’s able to understand my communication.
But on top of that, so we figured out that some other family members are also autistic. So I’m able to explain some of the things to my mum that she’s maybe frustrated with them. So if there’s something happening in their relationship and she’s really annoyed about it, she talks to me about it and I go, well, this is why that thing’s happening.
And my mom’s learning that when you want something from an autistic person, you have to give an explanation, you have to give the why and the logic behind it. And so she’s learning how to have those conversations. Right now it feels like she has to have a debate anytime she wants something done, but she’s slowly learning the language to use to make that shorter and shorter so that she can not have to fight every time.
Right. It seems to me you’ve opened a lot of eyes in terms of the autism world and how we should try and understand the whole community. And for me personally, I was having a conversation kind of similar with my wife about the autism and she was telling me, no, your son is already thriving in his own way.
He’s there, he’s always happy. But the challenge now would be the whole society. And the society is built for neurotypical, obviously, and now we just need to make sure that we go and enter into his world so at least we can teach him about daily living skills and life skills so at least he can thrive in the neurotypical world.
Autism parents are now opening their eyes about the autism world, so at least there’s a bit of like not a bit, but we are going steadfast and being able to understand the whole world. You mentioned forgetting to eat. Is it something that is no longer like for neurotypical? It’s like it’s twelve noon, so it’s lunchtime. You don’t have a sense of cue on?
No, I don’t feel hunger, I don’t feel fullness, don’t know when I need to drink, don’t know when I need the toilet. I can’t feel it. I feel nothing at all. I can go days without food and not realize because I just don’t get hungry, I don’t have those cues.
I do have an alarm on my phone that tells me to eat, but yeah, when I was in high school, it would happen so much, I’d be like, oh yeah, it’s been three days, haven’t eaten. It was my normal. I just didn’t realize that there were different feelings that people felt that I didn’t feel. There have been a very few times where I have felt hunger but it lasts all of 2 seconds and then it’s gone.
That’s going to be challenging. I mean you have to remind yourself. Good thing we have alarms now in our phones.
Getting into a good routine is really helpful with that because if I have a routine where it’s like okay, I get out of bed, I get changed, after I get changed I eat food and then after I eat food I brush my teeth. If my meal is associated with the rest of my routine I have to do it. Whereas if it’s like somewhere in there I eat food then that’s not going to happen.
Right? Do you have allergies like food allergies?
Dairy is an issue and I am so severely allergic to grass that I react to some fruits.
So do you manage that in terms of like medicines or medications?
Really need to like I can avoid the foods, it’s not too big a deal. But I also have such severe sensory issues that food is also problem anyway. So I mean I do struggle to eat food because it’s like it’s just gross and when you don’t feel hunger it’s a chore.
It’s not satisfying to eat food. You’re just eating it because you have to eat food so you don’t have.
A sense of taste.
I mean, like I can taste the food. When you feel hungry and you eat food, the food then satisfies that hunger. So it feels good for most people to be eating. But because I don’t feel hunger, I’m not satisfied by eating my food. I might enjoy the flavor sometimes, but my senses are so intense that it’s often just overwhelming.
It’s like a task for you rather than enjoyment. Okay. Nonverbal versus non speaking. What’s the difference? Is it a choice or unless you have a neuro neural, what do you call that challenge in your neuro? Forgot. Anyway, I’ll let you speak. I’m pretending I’m Expert.
So the reason I use both of those terms in my book is because generally speaking the nonverbal community prefers non speaking. I can’t remember the exact reasoning but it’s a preference of that community that they prefer to be called non speaking. But it’s still kind of a term that hasn’t fully transitioned yet because there’s some debate about what the different language means.
Like to me verbal would mean speaking with your mouth and so for me it would make sense to me that if I can’t talk I would be nonverbal. But obviously I’m not full time non speaking so I can’t really say what that community prefers. It’s just a preference. They can mean the same thing.
I think we are kind of heading towards a point where nonverbal won’t be the language we’re using. But I think the community kind of needs to come to an agreement on what they want it to be called.
But it’s not necessary. Like, for my son’s case, it’s not necessary. Like, he doesn’t know he can speak. He’s starting to speak now. Yes, but he was diagnosed autism. Nonverbal. Like, what does that mean? Is he going to learn how to speak? Is he not going to speak?
Okay. Yeah. So, I mean, people who are nonverbal or non speaking, they can obviously learn to talk. They might just find that it’s too exhausting for them. So, like, when I get to spaces where I can’t talk, I could probably force myself to but it hurts and it’s very, very tiring. And I stutter.
Sometimes the words won’t come out, and I would rather write. I can only get a few words out at a time. For someone who’s full time non speaking, probably it would be significantly harder for them. I can’t imagine.
But also, if you don’t learn how to talk when you’re younger, it’s it’s harder to then learn. And so trying to talk would also be maybe triggering some, like, self conscious feelings. So I don’t want to sound wrong.
Like, I’m I’m older, I should be able to say the words correctly, but I never learned. And it’s not fair to be putting that on themselves. But if you haven’t learnt, you haven’t learned, so what? Right. I think there’s a lot of ways we can communicate, and I think the community needs to be more open to taking that on board. I mean, because I can talk, people don’t let me communicate any other way most of the time, when actually, like, yeah, I could write, I could text, I could point at pictures. There’s so many different ways to communicate with people. Yeah.
Do you want to drink your cafe coffee first? Yeah, it’s all right. Sensory issues versus you ready?
Sensory issues versus sensory processing disorders.
Same thing. Wow. Sensory Processing Disorder is what would be the diagnosis. And I think a lot of people have sensory issues but haven’t been diagnosed with Sensory Processing Disorder. As an autistic person.
I haven’t been formally diagnosed with sensory Processing disorder, but I do have a sensory processing disorder. And I think it’s also, again, something a lot of people don’t understand. They think we’re just overreacting, when, in reality, for a lot of us, our senses are very heightened, so a lot of us can hear electricity, we can hear lights. For me, perfumes makes me feel like I’m suffocating. Jeans, depending on the fabric.
This one’s fine because it’s stretchy, but jeans feel like thorns running down the back of my skin. So it’s not just that we’re kind of overreacting it’s. We can feel and hear and smell and taste so much more than a lot of other people. Or they might be on the other side where they feel much less than other people and they need more stimulation to get their brains working. Yeah.
And then, I mean, also with the senses we have like the proprioception and the interoception and the vestibular system. So me not feeling dizzy ever is a sensory thing as well.
Yeah, learning those things from our autism one one on on one autism one on one in Hut Valley. And it’s more of like the foundation. But now I totally forgot most of them, most of the proprieceptions and stuff.
But I believe they’re important in terms of understanding the way children behave or how you are going to address like they’re having sensory issues in the classroom and stuff like that. Is there any other materials or references that you were using from this book that we can probably use as well as part of learning those things and making sure that we understand the whole concept?
I think I did reference a couple of links in my Acknowledgments. There’s one on there that was about sensory issues. I can’t think of any off the top of my head. I do think they’re very important things to look into because something like preocception, if a person’s not processing that correctly, they might be really rough and not know that they’re being rough. Or they might be hitting things or throwing themselves into walls because they’re looking for proprioceptive input.
But then the response from other people is to try and stop the behavior but not necessarily replace it with something that is safer. So a person who’s like hitting things or whatever, if they’re hitting things, it could be a proprioceptive thing and you need to give them some other form of input.
So yeah, it’s very good to look into, especially like interception as well, which is not being able to tell that you’re hungry or feeling constantly hungry, which is I can’t imagine. And for teachers at schools like have you got a grumpy child in your classroom? Is it because they haven’t eaten? You could try that. Or they might not know that they’re hot. Do they need to take off the hoodie? They might not know.
Yeah, similar to that heating the child heating themselves. My son used to bang his head on the floor whenever he’s overwhelmed with his sensory. But he used to do that. But he outgrown it, which is a good thing.
My understanding for that is like having a migraine and you can’t do anything about the migraine and there’s nothing else to do just to hit yourself on the wall. I’m not sure if that’s the correct I’m trying to relate it to that.
It’s kind of hard to explain, I think, because of the way I grew up. So in South Africa, being loud as a young female wasn’t really allowed. And so I would get hit for being loud because it was misbehaving. And so I learned that having that type of meltdown wasn’t okay. And so my meltdowns turned into suicide attempts.
And then once I got diagnosed, I had to try and figure out how to replace that, which has meant that I started having meltdowns where I had these urges to hit myself or like, pull up my hair, scratch myself, and it’s hard to explain. It’s kind of like you’re having a panic attack, which you’re completely out of control of, but you have this urge to hit yourself.
And I feel like the hitting myself is definitely like a proprioceptive thing. Like, I just want to be squeezed. The scratching is like, I need a distraction or I need to get this out of my brain and I can’t get it out of my brain and I’m so overwhelmed. And what do I do? You kind of just get so overwhelmed. What else are you going to do? And you need to get the energy out. And it’s really hard.
Yeah. I couldn’t imagine my son. I always turn back to him and it’s so challenging for him to see the world. Like, this is a weird world. So any final message to the general public or anything? Anyone from the autism community in terms of the journey or the struggle or the challenge that they are undergoing?
I think it’s really important to try and find information that’s positive because there’s so much negative information, especially when either you just get diagnosed or your kid get diagnosed, you’re presented with all of this medical deficit based information.
So I think it’s really important to find positive stuff so that you can grow up and not see yourself through this really negative lens. I also think it’s really important to engage and listen to autistic adults because they’re the ones who are living it every day of their lives. Right.
If you’ve never lived it, you can’t even begin to understand it or pretend rather than it, I suppose. But I think I recognize the challenge with engaging with autistic adults because of the way we communicate and how it can come off very strong. So just know that we’re not trying to attack you and we’re not trying to be rude. Brace yourself.
Just being honest.
Yeah, sometimes it can be hard to hear. Like the things we can say might not be what you want to hear, but yeah, if you are a parent of an autistic person, pick your battles. You’re not going to win them all, I promise.
Pick something that you’re going to be able to win.
Yeah, I mean, some days are going to be hard and that’s that. And I don’t know, we’re very logical, so if you can give us logic, probably be good. None of that because I told you so. It’s not going to work. Sorry.
And my son just woke up for the past few days. Not a couple of days, but he’s been waking up recently for around 430. He used to wake up like twelve 01:00 A.m. 02:00 a.m. And then that went away and now he’s kind of like waking up 04:30 a.m. And everyone is awake now.
What I did, because I sometimes wake up like that, and then I can’t tell if I’m supposed to still be sleeping. I have a Galaxy projector that protects on my ceiling and it turns itself off at seven in the morning. So if I wake up and it’s still on, I’m like, okay, I still need to be sleeping. If I wake up and it’s off, I’m like, I’m going to be getting up soon. So that way that’s how I know that I’m still meaning to be in bed.
Right. So is it a body clock thing or is it something that aligns with your body clock?
No, the light. So it’s just a Galaxy projector. So it projects like stars and whatnot on the ceiling and they move around. I need a night light to be able to sleep anyway, so that works well for me. Yeah. Because I can’t really tell if I’m still meant to be sleeping or if I’m meant to be awake. I just don’t know. So having the lights helps me with that. It also turns itself on at 09:45 p.m., so I’m like, okay, it’s on. It’s almost bedtime. I’ll get myself ready for bed.
Right, okay. Would you like to say anything about the book?
There’s obviously the autism book, which has been out probably a year now, and then the ADHD one comes out. Well, by the time you release this podcast.
Where can they grab it?
It should be in all bookstores. Wickles will probably be the easiest place to find it, but I’m not allowed to recommend one store, so also Paper Plus.
Is this available internationally as well?
So currently it’s available in New Zealand and Australia. And then I have a North American publisher as well, so it’s available in North America. We were selling through Book Depository, which people can buy internationally, but Book Depository is shut down. They closed recently. Trying to figure out another option because there are some people in other countries who have bought this one who want the second one, but we’ll see.
Do you fist bump? Thank you for your time. Appreciate it.