E5 | How two high masking sisters got an autism diagnosis

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Hello and welcome back to WTF is Audie HD with sisters Ellie and Paige. Hello there. This is a podcast about us. uh who we're autistic we're adhd we were diagnosed late and we're here to educate this is episode five and hello page how's it going hi there i'm very good how are you yes very nice very nice no i'm good thanks um last week we spoke about

our ADHD diagnoses and how we got to come to them. Obviously, bear in mind, that was a 50-minute chat. We have way more to all of these stories that we will probably share eventually. But that was a sort of a surface level look into ADHD and how we got there. We haven't even really defined these conditions yet either, but we will get to those. But this episode is going to be focused on how the bloody hell did we come around to realizing that we've...

possibly autistic as well, and then go for that diagnosis. We've both got slightly separate journeys on this, quite different ones. The ADHD journeys were similar. They were quite in sync, actually. Our autism journeys are slightly different and I think are a reflection of how we manifest. Although...

We'll get to it soon. We do wonder how you in particular, Paige, weren't picked up earlier, right? What do you mean? What? You're perfect. I am perfect. No, yeah, the emotional regulation and the turbulence and the... Well, there's actually a lot to unpack because there's some traits that look similar in both autism and ADHD. They're not actually very similar conditions, but they can look similar on the outside.

but it's actually the inside that counts, isn't it? Am I right? Yeah, cheers. Yeah, cheers. So we went through some private healthcare stuff last week because that's the route we took. All of ours was private healthcare and even in the private healthcare area at the moment.

those wait lists are still long. You hear about that in public health systems, how it's a long wait, but because of everyone sort of starting to figure out neurodivergence and there not being enough psychiatrists and psychologists, the wait's in the private. sectors are really really long as well but at the end of this episode we'll go through more about where you can go for autism and also cover off some of those public health systems

Spoiler alert, though, there's not a huge amount. It really is quite hard and tough in New Zealand, and it might be overseas too, to actually get diagnosed unless you have money. Also, just on that, a little bit of a side quest here. Even with private health insurance, I was talking to my psychiatrist about this when I went and saw her a few weeks ago. And with, say, my cover, I think you have the same. Is it psychology?

It's psychiatry that's covered, but not psychology. Sorry, no. Yes, you're right. But it says like specialist appointments.

for like your heart and all these sorts of things have up to like 10k cover but psychiatry has well i think it's like 750 dollars per year yeah she was like having a bloody spew at me going like it's just ridiculous and like that that's not covered up to you know so it's a lot it's not as accessible no as we know even well yeah even with health insurance you're right it's not it's a you barely get any funding a year for it and then when it comes to psychology

There's none. There's none. You can't get any funding for psychology through private health insurance. Yeah. And I said to her, it's so interesting that they have a lot of cover for like physical health when I think not all the time, but. A lot of the time, physical health or like unhealthiness. Yeah, comes from. Comes from treating your body not well over the years, which generally comes from.

not very good mental health so it's like if you it's like they just you know they put the plaster on the issue but don't go down to the core issue which a lot of the time can be mental health because people don't exercise and people don't eat well because yeah exactly and and living with things like undiagnosed neurodivergence causes really high cortisol levels which can lead to like cancers and things like that like there's so much um connection between

how your brain is and the physical manifestations in your body. So why would we not? It sounds so obvious when you say that out loud. I know. But the fact that we don't, like we, the society doesn't, oh my God, it's just crazy. I think it's because it just.

keeps people paying for their issues. Yeah, exactly. It probably is. Terrible. That bloody healthcare system, am I right? We'll take them down. So yeah, we'll touch on that stuff at the end, but we'll just start off. Most of the episode will be about Paige and my...

journeys towards autism and how we figured that out and why first of all a lot of the time ADHD women especially get diagnosed with ADHD they get that under control they get medicated And all of a sudden autism starts popping up because it's very common for ADHD to actually hide autism because when you're ADHD, you are quite outward and impulsive. So if you are inherently.

a little bit more quiet really it's actually your impulsivity that's taking you into those social situations and and being loud or whatever that's a real generalization and a not even a great example but often they actually hide each other vice versa as well i think my autism hid my adhd because i appeared to have everything under control because i was like just so neurotic and you're like stuck in this no man's land literally in between the two looking like you're managing life but

the internal turmoil is like outrageous. Yeah. And that's what I think is really hard about all DHD, which obviously we're not talking about today, but just both of them together can be quite, you know, a contradiction. Yes, they definitely can.

um now should we start with you Paige because we've talked about you a little bit as a child but we once again I personally never suspected I was autistic if anything I was even more um unconvinced that i had autism like i i when i thought i might have adhd it was still like no i don't but i was like i could have when i thought about autism i never even thought that was like an option for me

I just didn't even think it because mainly I think the main thing was I'm good with people in quotation marks. I have lots of friends in quotation marks. I appeared very socially. good and and the stereotypes that are generally tied to autism is that they can't socialize they can't make eye contact they can't which actually your eye contact isn't actually good really no it's not it's not at all well like when you're

I hate it. Yeah, no, you're quite – but anyway, it's – But I masked my way through, so, yeah. But with you, Paige, like, we – you can start off. Do you want to talk about your childhood experience? And it's similar to your ADHD one in a way, but – We have touched on that book you read that time, but when you were younger, we did think potentially you could be ADHD and even potentially have autism-ish. Well, we didn't really know. We didn't know. Well, obviously no one picked up on it, but.

Well, as we said last year, mum and dad did take me to a couple of places, like psychologists or psychiatrists, and they didn't pick me up. Obviously, we talked about that. for adhd or autism even though i came home one day as i said in episode one i think um after reading a book about asperger's syndrome which is what it used to be called um and said

oh, my God, Mum and Dad, I definitely have this. And it just made sense for my entire life until that point. And also we looked back at a lot of footage last – you did. Ellie looked. back at a lot of footage because it's just been my 30th birthday and she got together a nice video uh her and her partner sam and um looking back at that i had a lot of tantrums as ellie said i think in episode whatever it was but i actually think

that was like a complete emotional dysregulation and meltdown most of the time over like this, what seemed to look like the smallest things on the outside. But, um, Also looking back at these videos, I noticed, which we didn't really, no one thought at the time, but looking back at these videos, I'm actually quite not mute fully. No.

But I don't really talk. Not really. I don't. And I also, but I'll take like one word that you say and I'll mimic you. Yeah, which often happens with autism. But I didn't really speak. I was just, I'd use one word. Whereas you'd be like, yes, and blah, blah, blah, blah, hyperverbal. Yeah. And so, yeah, one time at my birthday, I'm like four or five years old, three or four, which is young, but like a lot of kids are.

chatting by then and the ice cream comes out onto the table and i'm like and you say ice cream and i just mimic you and go ice cream ice cream and say it about five times but i don't actually Yeah, no. And there's another video of Dad talking to me and I wouldn't speak. No, yeah. I didn't speak really a lot unless I was having a meltdown. Yeah. Yeah, unless your needle needs to be met.

you were actually reasonably quiet or if you were having a sugar rush you might be a bit like hyperactive but again that could have been the adhd more so um coming into play there yeah um also like friendships rsd rejection sensitivity dysphoria I definitely have that. And as a kid, and especially as a young teen, like, yeah, that really shone through. Yeah. And I felt different.

I don't know why. I always felt different and I could never explain why. You often, as well as a young child, had like one friend at a time. Kind of. Like you had more than one friend, but you often had one friend. And we've spoken about this before. It would be like.

a boy when you were younger it was often a boy um but you you were also kind of you didn't fit um conventional social situations all the time well that's how it felt for you but then sometimes you would do things like I'm gonna tell them about the time you um came up and I mean I kicked her you mean I spat water at her well there was I'm pretty sure oh you're talking about

Yeah, yeah, yeah, yeah, yeah. Yeah, sure. No, yeah. Well, they're just little things that paged in. This could actually be ADHD. I think this is just like sense. Or the combo of both. Yeah, it's like you were seeking stimulation, but.

Once she like just came up to my friend at school and just spat water in her face. And I used to get so annoyed and embarrassed because I'd be like, sorry. And then one time you kicked one of my friend's mums randomly. Randomly for no. for no reason at all and it's just like is that like

There obviously was a reason, but we didn't think there was at the time. It's either emotional regulation issue, it's an attention-seeking thing, or your needs are not being met, so you're trying to get attention elsewhere. I don't know. And not able to use my words, so I just lash out and have a mouth.

down kind of yeah totally but yeah there were things like that i think with you that were um more unconventional than like a normal it's not normal like kids have kids complain and i mean i don't have them i can't you know but from what i've seen you know just other kids like yeah sure they have tantrums and all that yeah which is normal but this happened frequently and they were intense yeah and it was like you couldn't get me under control i was incontrollable almost yeah

yeah yeah so we went right through up until 28 and 30 pretty much um so me 30 and you 28 not being diagnosed with autism at all not even for me not thinking it you never got no diagnosis you were looked at even sorry even though yeah i came home with that book and even though mom and dad did take me places i was in front of psychiatrists and psychologists and they they didn't even pick it up so if my parent like if they can't pick it up

brick can my parents pick it up who don't have any educate well you know they didn't study that yeah so they did what they could in their power and then you know the system failed me i suppose um which then spent the next 20 years feeling very misunderstood having a lot of issues um yeah yeah exactly so we get to 28 and 30 now we've both been diagnosed with adhd for a little while and

If you don't know, there's a high percentage of autistic people that have ADHD and there's a high percentage of vice versa. So it is common. It's about 50%-ish. These numbers are quite vague because the research is still being developed, but there is a high correlation between autism and ADHD being existent at the same time. And just so you know as well, I think I've mentioned this before.

in 2013 was when that was actually distinguished in the DSM-5 that you can have both. Before that, you can only have one or the other. But now we realize you can have both. um so again this research is very very young research hence why we're doing this podcast too because we're trying to put our experiences out there yeah sorry just another thing on like the co-existing things i always had tics from a very young age and i know we've covered that but that's just another like tics

And Tourette's can be highly linked to autism. Yeah. Highly, highly. And ADHD. And I have both, so like... Like I had tics, so it's just like, it's just a dead giveaway. Even that, the fact that you even, it wasn't even invisible. You literally had a physical manifestation of something happening to you and it still was just like, yeah, I think that's just Tourette's. That's probably it.

It's like, is it though? Or is there more to it? So we, I start, I'm learning, as you know, special interest is now ADHD. I'm learning about it. I've been diagnosed, you've been diagnosed. I'm learning all about it. my algorithms on social media start showing me neurodivergent content and I start seeing more about autism. And again, I'm like, yeah, not me, not me. But then I started really like taking more notice of it and going, wait a sec.

why do I feel like I actually do relate to some of that stuff inwardly, not outwardly, but oh my goodness, there's a lot of things that I relate to there. Could I be autistic? And I also just want to preface that we don't have any autism diagnosed in our family.

There was that hint for me going, is this on our parents and both our parents' families? Maybe it is. This thing popped up on my Instagram and I know this is just Instagram and it's just one post I saw and it's not necessarily a scientific thing, but this is the one of the posts that made me go. way to tech so stereotypical autism this is again stereotypical autism hypo empathy people assume and have always thought that autistic people don't have empathy they lack it um

Stress mode is flee and fight response. So either run or fight. Concrete and pragmatic thinking style. Special interests more obscure. Again, obscure. That's such a subjective word. Obscure? What do you mean? Yeah, it's a subjective word. Oh, because we don't like trains, but I like plants and I like crystals. Like I have obsessions over other things, but because it's not trains, can't possibly be autistic. Exactly. Externalised repetition.

High alexithemia, which means not being able to identify the emotions you're feeling. Oh, God, yeah. Both of us. Whereas the autism non-stereotypical, again, this is so surface level still, but this is the thing that made me go, huh, maybe I should look into this. Hyper empathy. I have intense empathy. Stress mode. Fawn and flee. Me. Deeply existential. May have existential OCD.

uh camouflages autistic traits and mimics holistic social norms holistic means not autistic socially blends in but has a diffused sense of self and high anxiety so like i don't know who i am and i'm like oh my god i don't because i'm always pretending Not pretending to be someone else, but I'm always performing. You're just like so hyper aware of yourself and the fear of being perceived as wild. That's been my entire life. Yeah, exactly.

Special interests culturally blend in. This is what you were just saying. Oh, sorry. That's what I was saying. Yeah, like I might like the Olsen twins. I'm obsessed with them. Or I love Formula One from the age of eight. And that doesn't look that weird. It's kind of, oh, she likes sport and she likes.

child actors oh that's normal but then if it's a boy who likes stacking his trains in a row it was more like oh he's probably autistic again so that was the first kind of post that made me go maybe I should look into this anyway once I started going down that hole I started realizing that wow I relate I think to the autism side of it more than my ADHD side I realized that the one stereotype we've been given in the world has been

Based on a boy, studied research on boys and more like mute, doesn't look you in the eye, has no friends, likes weird things. Weird. Yeah, weird in quotation marks. All those stereotypes, I never fit. I was the opposite. I had a lot of friends and I looked like I was succeeding, blah, blah, blah, blah. Anyway, because I'd found out that there was such a high correlation between ADHD and autism.

and i just can't help myself which i think is part of my neurodivergence i just have to find out the why of everything i went to the psychiatrist that diagnosed with adhd and just sent him an email and i was like hi i'm wondering if i can just be screened for autism

I think I could actually be comorbid with that and ADHD, blah, blah, blah. Now, this is where we've got a really important lesson to tell you here. Again, I'm coming from privilege, but he emailed back and said, hi, Ellie.

You didn't appear in our consultation for ADHD to be displaying traits of autism. God, that just racks me up. Something wicked, eh? Yeah. And I... What do you mean? I don't look... Yeah, this is a huge stereotype we can get to even in later episodes and get into that whole... thing but I was essentially immediately dismissed um just in that moment but he did send me the autism quotient which is the screener that they use to work out if they should look at you further for autism

They send me this test, and I'm like, okay, he goes, but do this, fill this out anyway, and we'll go from there. And I'm like, okay. So I get this test, and not joking, the question's on here. Bear in mind, this psychiatrist was in his 70s, male.

had probably studied about 50 years ago. So I don't blame him again. This is not an anti-him thing either. Like this was just the way it was. But I think his research was really out of date. And he gave me this test, which is the AQ. And it was based on things like, did you like...

trains when you're younger like genuinely i was reading through it going this is based on boys this is so surface level and so stereotypical oh my god i couldn't believe it and i was like filling it out going well yeah but no but yeah but no but yeah but no but And then I get to the end. He emails me back. And his response was, hi, Ellie. I've scored your AQ. You score 27 out of 50 points. Which is quite high. Yeah, it's still quite high.

This is under cutoff line at 32 points. So I needed to get 32 points for him to then warrant assessing me. For all practical purposes, this indicates that you have quite a few symptoms, but most likely not enough to qualify for diagnosis.

Happy to discuss on our next encounter, but that wasn't going to be for two years because I didn't need to see him again. And I wasn't going to go in to him when I already knew he was doubting that I even had autism. Like that was just like, I'm like, nah, he doesn't believe me.

And his test was boy skewed? It was. It really was. So this is a lesson that psychiatrists these days, because research is moving so quickly and we're learning so much more, they are not always right. You just need to, I'm not shitting on them. but they are not always right because that was my experience. I got literally dismissed and thank you, no thanks, because I'd had one 90-minute session with him for my ADHD, which bear in mind I would have been masking for.

And he's judged me on that because I probably made eye contact and was quite pleasant to deal with. So my gut was going off and I went to my GP and said, here's all my symptoms. I've been writing it down. I've been researching this for months. And I think I am probably.

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Autistic. And didn't she kind of like – Yeah, she pretty much was just like, yeah, okay. Well, like it was – It was almost like, tell me someone I don't know. Yeah, she was still like, yeah, all right, we'll get you checked out, eh? And I was like, oh, okay. I guess –

some symptoms i feel like this is there's so much to say about this autism thing so i don't want to go too much into it but um the things that i did actually feel was high level of masking not actually enjoying social situations if i actually boiled it down to it Everything overwhelms me. Logistics for things that overwhelm me. If plans change all of a sudden, I am just, I have a meltdown. Sensory. Sensory nightmares, overloads all the time. But.

Because I was so good at masking, I had even fooled myself. Yeah. I had masked so heavily that I had forgotten who I was or not even worked out who I was because I'd spent my whole life reacting based on what I think.

like people needed from me or assumed what they wanted me to do also also sorry to stop your flow but like two or three years old which well when you could start talking like you weren't you didn't sound like a kid no you were like yes that's very nice thank you mum and daddy mummy and daddy like yeah I was a mimic you mimicked them yeah I wasn't organically being no me yeah from so young you're right and so I started realizing no I think I actually am I think I'm just the

the most intense masker that has ever walked this earth maybe not but like it felt that way and i'd always said to myself why do i always feel like i'm performing Like, why is this? And I always felt like I didn't fully connect with people. Even though I did, I didn't. No, I don't either. No, it's so hard to explain. Very, very few people I do. And so that's why I had one friend at a time.

Because the one that I would connect with, I would be not obsessive, but I'd be like, oh, I found someone that I connect with. And it would be like, and then that would become too much maybe for some people. But I don't connect with people easily at all. Yeah. Yeah. I also, one thing about me as well and Paige is we process emotions quite slowly. So like, I didn't realize I did this until I started researching it and learning about it. Something will happen, a situation or something.

And I might not know, we've talked about this before, I might not know how I felt about it until a week later. And it's not because we're slow and not as smart. It's because our brains fire off on way more neurons than neurotypical people. So we've got more to process before we get our answer.

So I always needed time to think about things and digest things. And I would prefer someone to email me than call me because I freeze. And there were all these little things where I was like, oh my gosh, I think I am autistic. Also on that, the...

people pleasing thing which me and you are chronic for which i think can be a learned behavior by a lot of Neurodivergent women and men Being people pleasers Because you've spent your whole life Feeling rejected or different Also we fawn in the moment Because We are terrified of

Well, I think I fawn because I don't even know what I want. So I'm too scared to come out and say what I think I might want because I don't even know. So why should I say anything? I'll just fawn and it's easier to survive right now. It's a survival thing, yeah. Or ignoring what's going on and just going, nothing, I'm not involved in this. Yeah. I do actually get severe anxiety attacks before going into work.

even socializing with people and getting ready was a stress and like just everything that I went through, I thought everyone was going through it. I thought everyone was doing this. I thought it was normal. Yeah. And then I realized it wasn't, but then to ever again.

to everyone else we were just like looking fine and the thing about us as well is we quite because i think we've got the adhd again that brings us our personalities out quite loudly and we're also got a good sense of humor and i honestly think that mine and your sense of humor

has actually got us through life because people have at times found us funny. So we kind of fit in by being funny in a way. So anyway, I followed my girl, went to my GP. She said, yep, I think you need to be looked at by a woman. who specializes in neurodivergence. And I met this lovely psychologist who, oh my gosh, she's just the best. I owe my life to her genuinely. Basically.

I emailed her and said, hi, I'm Ellie, blah, blah, blah, blah. Told her my situation and she basically said, thank you, Ellie, for coming to me and trusting your gut. You've done the right thing. Here are 10 tests I'm going to send you, 10 screening tests that I'm going to send you before I even...

assess you properly because i want to make sure that you know we we do this right but you're not alone there are many women like you who get dismissed like that because i'm gonna estimate that you're a highly intelligent high masking woman so Bless my psychologist. I did about nine. Yeah, I think it was like nine tests. That's so good. Sorry to stop your phone. Screeners. But screeners, because obviously screeners are not a diagnosis in any way, but they're a screener.

But like the more, like, so they're not always accurate, but like the more means the average, you'll get the average. Exactly. So I'm not good with words, but you know, you get the average. Right. No, exactly. So I did the.

She did give me the autism quotient test, which was the same one I'd done, a similar one I'd done. But she also gave me the RADS test, which is R-A-A-D-S. And that's actually a slightly... adapted version of what they did with the spurges back in the day um and it's more it's designed more for uh this is what it says the rads is a

reported to be a highly specific and sensitive instrument that was specifically designed to capture individuals with an average or higher IQ and mild or subclinical autism who often escape diagnosis so this RADS test if you're listening to this

You can actually do it online. There's a website called autism.com slash tests, and all these tests are on there. Their screen is, again, this does not mean you're diagnosed, but it does give you an idea. These are the tests I actually used before I went to a psychologist.

Bear in mind, this is a psychologist now, not a psychiatrist. So I had to pay for these sessions privately and I spent a few grand on this. But the RADS is kind of designed more for... people who are likely to score as level one autistic so just so you know there's level one two and three of autism level one is requires

a little bit of support so you it may be you may know it as high functioning autism that term is not a thing anymore that we don't call it high functioning because that's problematic in itself because you may appear to be high functioning but inside

you're not functioning so um again we're coming at this from our level of autism so requiring support um that we might struggle with social interactions like making and keeping friends or understanding unwritten social rules these again are very generic but

Level two is requiring substantial support. So you might have social communication issues where it's impairing, I guess, your life more. But again, that's another convoy we'll have about the three levels. And then level three is requiring very substantial support. There are three levels.

Asperger's is not a thing anymore because that was Hans Asperger back in World War II working in Austria under Nazi Germany. They were basically trying to categorize who had disabilities and who didn't so that they could, you know. We all know what happened there. People who weren't helpful were killed. But if you got a Spurge, if you were diagnosed with a Spurge's, then you were deemed good enough to survive because you were helpful because you had like a higher level of intelligence.

apparently um but we now don't use that term anymore because it's got very bad connotations and it's it's awful because the people who are diagnosed with just autism were sent away yeah exactly So levels one, two, and three. And so this RADS test, back to my original point, often gives a good clue if you are just level one autism, which I am. That's what I was diagnosed with was level one autism.

um so I did all these tests she came back to me and again I scored like very highly on these tests and she came back and said thank goodness you've come to me Ellie because you are giving already before I've ever met you you are giving the stereotype of a high masking intelligent woman who's autistic so that's actually another stereotype we've now figured out this there's that and i fit more that one um so long story short i went in

had nine 90-minute sessions with her. So that's a lot of money and a lot of time. But I don't regret it because I was privileged enough to have the money for it. And she was awesome. And she's amazing. Honestly, I've never felt more seen in my life. I can't even explain what it felt like to actually finally admit my needs. Like I've never really admitted my needs. Oh my God. Like now that we know that you are and I've learned more about like.

autism and woman you are so freaking autistic yeah it's actually like quite crazy yeah and it just frustrates the hell out of me because on the surface yeah i think there'll be people out there going Ellie Harwood? Autista? Like, because you are so appearing to be good with people, but I know you're the best on this whole planet, I reckon. You do. And you are so, you are.

yeah no it's actually crazy now that we know more um and we don't we aren't just learning from the stereotypes that we once knew like now that i know there isn't a type of autism i suppose which is the one i have um and it's that high functioning high masking intelligent socially intelligent woman um i shouldn't say high functioning because it's not really a term we use anymore because it's problematic but um i basically

There's three main criteria that you have to meet with autism and they're quite generic. Like what they are is one, difficulties with social communication interaction. Two, repetitive behaviors and strong need for routine.

And three, the symptoms needed to have been present in early childhood. So I can break those down, but we will do another episode just about autism one day where we actually talk about what it is because this is more just about our diagnosis journeys and really emphasizing the fact that...

We were missed. And even when I went, I was dismissed once again. I had to follow my gut. But I had you fill out a couple of tests for me, didn't you, Paige? You had to fill out some tests for me. You did.

oh yeah i remember now yeah sorry and then mum also uh mum came to one appointment with me we also gave my psychologist my plunket book which is like my baby book and there were like lots of things in there like i saw that i had been three weeks old I was sucking my thumb so hard that it was getting blisters on it and like that's like self-stimming that's stimming like that's hair twirling where mum would have to cut your

not fingers cut your hair because your hair will get tangled on your fingers yeah yeah no there's all i started reading my plunk about going oh my gosh i've always been trying to like self-regulate myself um so there was a lot to it so this is nine sessions 90 minutes I'm very privileged. I'm aware. It took a long time. It took a lot of money. But I figured out that, yes, I'm level one autistic. And I display very differently to what you may know in the old.

like stereotypes that we've learned. I met the criteria for all three sections. We found out that I had this in childhood through my mom and my punker book. We also found out through you about my behaviors. And then we found out through like, so.

many questions and so many sessions and my psychologist actually found it really hard to diagnose me because I was so high masking so she had to work out that's why I had nine sessions she had to work out like is she just masking or is this legit some people only need three or four sessions but i needed nine because she couldn't work out what whether it was real or not and the other thing i needed we need to just mention is that trauma chronic ptsd

can look like autism so that was the other thing she was testing was that she was making sure that i'm not um i don't have trauma because that can also just be what might look like autism but it is just trauma so we got to the bottom of that and realized that i do have trauma but it's not it's it's the autism that is isn't me people who are autistic um that don't know that they are throughout their childhood teens and adulthood um who don't get their needs met can cause

trauma and trauma sounds like a hectic word because it is but it's true that autistic people um what a normal not normal what um a non-autistic person won't find traumatic um Autistic people are a lot more like not sensitive. Yeah, yeah, but we are. But I think trauma affects us more intensely. It can. Yeah. Because.

A lot of the time trauma affects the amygdala in the brain, which is where all your fight or flight response comes from. And often people with autism have sensitive amygdalas anyway. So then when we have a traumatic experience. we do have a more intense reaction to that trauma. Which is probably why we have meltdowns and the emotional regulation is not good. And also sensitivity to light and like sounds. That's to do with your amygdala, right?

um or no i don't know i can't quote on that i can't be sure about that um amygdala i think is more about fight or flight if your amygdala is overstimulated So that's often what someone with autism has. Your anxiety will outweigh the logical parts of your brain and cause you to panic. Oh my God. Yeah. Yeah. So your amygdala often in autism.

is more sensitive and then when you add trauma onto that yeah we do we can react differently and more intensely than neurotypical people or people who are not autistic which is illistic so I basically got this diagnosis, but I really had to push for that. And it took about nine months. It was a long, long process. And when I finally got it, I think I had a similar feeling to what you had when you got diagnosed with ADHD. It was that like, oh.

hey, I've figured it out. Like the ADHD thing for me was like, huh, that makes sense. That's funny. But this one was like, oh my gosh, I have even more self-compassion for myself because I actually relate to, I think, I'm not going to say I'm more autistic, but. I feel like I resonate with the autism more than the ADHD. However, outwardly, if you knew me, you might think that I'm more ADHD than autistic. I know. It's so funny. This is the thing with these things. These, is that.

everyone's behavior manifests so differently depending on just every single factor on this planet yeah yeah it's just what also frustrates me about when you hear people you know say like things like oh get on with it um i'm adhd get on with it it's like okay it's so good and i'm so happy for you that your adhd journey hasn't been super traumatic that's amazing happy for you how can you make a judgment on anyone else's experience without having walked a mile in their shoes exactly right it's just

Oh, it frustrates me so much. No, same. It is very, very frustrating. And like there's so many other factors to consider as well. Yeah, that's the thing. I might have more trauma than you. Yeah. And therefore, yes, my ADHD doesn't pay me more. Yeah. Also, you may have been.

um diagnosed when you were younger so you were able to accommodate yourself way younger this is the thing we've just figured it out it's the not knowing like you said the hero of it all was having the why medication was secondary yeah that's the thing anyone who doubts anyone's journey or experiences with anything in life, actually, but neurodivergence, get out of here. Get out of here, mate. You haven't walked in one of my shoes. No, but genuinely.

We can't judge each other because honestly, if you've met one autistic person, you've met one autistic person. We all look, sound, feel different, like genuinely. So as soon as I got that diagnosis, I literally, me and Paige were like, oh my God. Well, so are you then. It was like, oh yeah. I was just going to say, it was like, it was like this epiphany that just like hit us in the face and we were like, oh my God, but of course. Yeah. It's like so weird. Like when you're like.

and you're like oh my god yeah you freaking are yeah i know back again and you look back you're like oh my god and that's why you like twirled your hair and got you there yeah sucked your thumb and and then it's just a big journey again because your mind just ruminates over your past and your past you know behaviors because rumination ruminating on things um is no not a symptom but it's a

It's a response. It often manifests in people with autism as ruminating on thoughts and spiraling. That can also be OCD as well, like obsessive thoughts that just like... Yeah, and you can't get rid of them. So that's what we do. We ruminate over our whole lives. Sorry, yeah. No, yeah, exactly. So, yeah, we basically then, it was honestly like, as soon as I got my diagnosis.

I immediately was like okay well pages because we had already thought for years that you were and it's only because I then went and had the funding to do it and also the like sort of thanks for paying for it bro yeah no worries um I had the neuroticism to just just need to know

So we kind of just went, you know what? I've paid thousands of dollars for that. Paige, you just take that diagnosis as yours as well because we already thought you were. And again, it's hereditary. It does come within your family. So we were pretty much just like Paige is autistic. And also...

ADHD there are medication routes that you can go down but with autism so far there's not really anything so it's kind of like well you know there's no point in you going and going through that you know journey exactly we'll just treat you as you are as as autism but as autistic but Why choose a Sleep Number smart bed? Can I make my sight softer? Can I make my sight firmer? Can we sleep cooler? Sleep Number does that. Cools up to eight times faster.

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in the last few weeks what's happened oh yeah so i why did i oh i needed to go back to my psychiatrist because i hadn't gone back in a couple of years and you're sort of meant to go every year to get checked up on your meds and stuff and obviously i have adhd and so i need to go get that sorted so i booked in and then while i was there i also talked about um Another medication I'd come on to for my PMDD, which neurodivergent woman out there, if you know about this.

Then you'll know what I'm talking about, obviously. And if you don't know about it, ADHD, neurodivergent woman out there, and you struggle with really bad periods, maybe look into that. But when you say bad periods, we mean the premenstrual. side of it not actually the physical no we mean it's premenstrual dysphoric disorder yeah so it's those kind of two weeks leading up to it if you are a different person in those two weeks versus the other two weeks

You may have PMDD. That's a whole other episode we'll do. A whole other episode. And it impacted my life and you, Ellie. Yeah. It was just like, how is this normal? This can't be normal. So I went and anyway, reviewed that. And then while I was there I expressed how I definitely think I'm autistic. And you told her that.

I told her that my sister was, told her about the book thing at 15 years old. She's like, oh, well, do you want to do some screeners right now? We can just do that and see how. I was like, oh, okay, why not? Because we had some time. Better get me bang for me buck. Yep, why not? And so she took me through two tests. Comprehensive autistic trait test. And then the other one is a camouflaging autistic.

traits questionnaire the cat cue the cat cue yeah those are those are two that i did as well okay so these are female skewed

Well, they're almost like, men can do these too. And it's actually important, I think, that men do them too. But I think the camouflaging one there, that one's about masking and whether you have a high level of... fitting into society and and changing your behaviors this is actually a really interesting one if you want to try it there's a cat cue version on autism-test.org I think it is and you can actually do a cat cue and it tells you if you're

masking which can often reveal that you're either traumatized or you have neurodivergence yeah you did that one yeah sorry they're not specifically made for the woman but just that generally a lot of women do present like this. So that's why they make sure they do these tests if you're a woman. Because I think we're more complicated. Like I actually think in some ways we have a little bit more complication because of our hormones.

Because of us and our position in society and all of that, I think they just, women are harder to spot because we also, again, we hide our emotions and our needs. Yeah, so I did these two tests on the...

Patty test, comprehensive autistic trait inventory test. There's like a section in blue where it says consistent with autism and I'm in that section. And this test is made up by... like pillars essentially, of social interaction, communication, social camouflage, self-regulatory behaviours, cognitive flexibility and sensory sensitivity. And of that, three out of the six I scored right in the section that says pronounced. It's right at the top of the line graph. And that was sensory sensitivity.

social camouflage and social interactions which is yeah where all of my issues lie yeah so those were really high and then The other ones were still reasonably high. They were over average, but they weren't so high anyway. Cheers. Well, yeah, the thing about autism is that everyone goes, it's a spectrum.

And everyone's on the spectrum. It's not true. Not everyone is on the spectrum. That is actually false. And the spectrum, by the way, is not a straight line. It doesn't go across here and it doesn't go not very autistic and then very autistic. It doesn't. work like that the spectrum is actually more like a wheel and you might have little pies and triangles are in that wheel and my pages will when it comes to sensory um or social interactions

Her wheel is really big there. Her pie is real big because that's something she struggles with. But then some of the other side of her pie might be a little bit smaller. So that's why the spectrum thing is not linear. It's actually more round. And you can have... really intense traits within that wheel and then other traits that aren't so impactful like repetitive behavior and movement might be slightly smaller for you so no not everyone is on the spectrum no not everyone has autism and

The spectrum is more of a, see it like a circle full of like pies or triangles that have been cut out of it. And then depending on the severity of each thing, it will come further out or stay further in. Yeah. The second one was the cat. test which was made up of three pillars compensation masking and assimilation what's assimilation again um i think assimilation is how you've adapted yourself to society i think

From memory. And I am at the top section of high and almost in the extremely high for all of them. And my particularly masking and assimilation are extremely high in the extremely high section. Yeah. So that is a great example of particularly woman. being really high masking and therefore hiding the traits of autism and that's why we're hard to spot and hard to find yeah that's why it's really important to go and do more than just one screener so genuinely if you want to go to autism

Let me just make sure I've got this right. Oh, sorry. That website that I've been reading this whole time, it's incorrect. It's called embrace-autism.com. Now, bear in mind, again, these are not actual diagnoses. However... they will give you an idea of one, whether you're masking, two, whether you're going to potentially score highly on a screener. And it might be a good way to work out whether you should even go and look into it because it is expensive and stuff.

But the embrace-autism.com is where I actually did a lot of my first tests. And that's when I figured out I was masking. And they basically have a form of the test that the psychiatrist or psychologist will give you. It may not be the exact same, but it's a... It might be pretty similar anyway. And then, sorry, on that, after I did that, am I allowed to finish the story? So she was like, oh, yes, okay. So that's.

you know school pretty high there and i was like joey and she was like now what i'll do is um she said sometimes some people take more take more sessions um but because you are you have scored quite high i'm going to send someone a questionnaire um like your mum who who you know and they need to answer it based on who you were

around the age of 14 and 15 just to see if this if their questionnaire aligns with what these screeners are saying and if that highly aligns and yeah then be confident in giving you an official diagnosis yeah so that's a really good example of two different journeys when it comes to autism diagnosis so page hasn't actually got that tick yet but like we've already what do you mean we've already i've got plenty we've already um self-identified in you because we knew it from

Very young, really, and deep down. Now that we know, we know. Oh, I know. You have basically dodged a bloody big bill, you bitch. And I've taken the old bill on me back. So, yeah, nine sessions versus one. No, but it's great. Well, mum and dad did spend money on take-me plays. No, they did. They got nothing to bloody show for it. Yeah. Just a big.

fat bill yeah exactly um so yeah Paige I think based on the genetics in her family so me being diagnosed um already really advantages Paige's process because they already know it runs in the family so it's almost like okay well it's there we know it's there

Um, and now it's just like, how does it look? Uh, so we'll keep you updated with that. Cause that's actually, this is currently happening. We don't know what the outcome of that's going to be. Um, but you may get a physical diagnosis just based through that, which is really cool. I hope so. Because we're pretty bloody sure you are. Oh, I know I am. Sorry. Yeah. Look, we're getting a bit long on this episode now, but.

We will get to actually more into the nitty gritty of autism, what it looks like, how it looks in us, what the differences between high masking, low masking might look like, blah, blah, blah. There's just so much more we want to cover. I feel like we say this so much. We'll get to that. We'll get to that.

But there's just so much to cover that it's like. It's hard to know how to contain all of this. Like I just. And how to structure it. Yeah. So if I were you, if you were thinking that you could be autistic, really honestly.

stereotypes throw those out the door because they are very different to what you think i didn't think i could be and i'm actually quite autistic um and go to embrace uh embrace hyphen autism.com you can see a few of these these tests like the rads which is one of the ones i did

The CATQ, which is the camouflaging one. The AQ, which is just the autism quotient. And again, these are not diagnoses. We are not medical doctors. This is not actually legit medical advice, but this is just our experience and what we did. And we hope that it helps you a little bit.

Now, in terms of public health system in New Zealand, when it comes to things like autism and ADHD, look, there's not... There's not a lot of initiatives. So you could go through Tefatu Order, which is the Health New Zealand. You still either way have to go to your GP.

You have to go to your GP first and go, I think. Which even that alone without insurance is like 70 bucks. Exactly. For one sesh. And your GP might dismiss you. I know many people have been dismissed by the GP. So if that's the case and you're in your gut, you think that you asked, go to another GP. and try because i know people that have been dismissed especially women yeah me too yeah then they might refer you to a specialized service so if you're if you've got a child or you are a child

then you're more likely to be able to be put through the public health system. There's a bit more funding for children. So they might send you to child development services. But again, there'll probably be massive weights on this because... Based on how big of a weight there is for private healthcare, these ones must be massive. There's also community mental health services, which can also explore things like autism and ADHD.

um but again with autism you need to be assessed by a psychiatrist or a psychologist um and again it's not very accessible there's also a place um that i just discovered this week i hadn't heard of this but there's a place called beehive in New Zealand it's beehive with a y instead of an i in the middle and it's basically a place where someone set this up for adhd support so you can actually it's like a hub you can go to there and they will then

direct you to psychologists and psychiatrists i think that specialize in adhd so that's really cool there's more of this coming so that's beehive.health uh with an with an h instead of sorry a y instead of an i in the hive um also Autism New Zealand, which is our sort of our non-for-profit autism organization.

They have actually recently set up a place in Petone, which is in Wellington, where they're now starting to do assessments for autism. And it's meant to be a more affordable way. You can only do it if you're in the Wellington region. It's a very positive sort of, it's quite positive because it means that they're now, they're recognizing that these services are inaccessible and they're trying to find other ways that we can get people diagnosed.

they may look into eventually doing Zoom consultations for autism, but not yet. So if you're in Wellington, then lucky you, you can go there. But essentially, the bottom line is that... it is still pretty hard and I don't want to discourage people, but. Well, I think with autism as well, well, the thing with ADHD is that there are treatment and medication options that you can try.

which have helped me, but doesn't help other people. But the thing with autism is, like we said, there's not yet... There's no cure. There's no cure or treatment to help it. And so... Because it's so inaccessible and expensive to get a diagnosis for autism and you are, you suspect it and you really struggle, have the same struggles that we've explained or really identify with the traits of an autistic person.

keep doing your research at home and keep like following these pages. And sometimes it's just enough to treat yourself that you are autistic and implement things into your life to help you with. Do you know what I mean? Yeah, definitely. Just self-identifying might even just help you have a little bit of pacing and just understand why your brain works in the way it does. And also a lot of people like I, my psychologist, all of my sessions were actually done via Zoom.

which I thought was really cool because it's very accommodating for someone who doesn't like going out, having to get dressed, having to go into an environment I'm unfamiliar with. It's actually great because I did these assessments and these hour and a half chats from my bed, which I think actually makes me more relaxed, which therefore gives her a better representation of who I am. Those sterile environments where you get put into a room and you have to steer them across the...

oh that's awful for someone who might have autism so a lot of the time you can't actually do these assessments via zoom if they offer them which i appreciated um but yeah in conclusion starting with your gp is the best bet but um The waiting list is so long at the moment. Don't give up. We're not trying to discourage you from doing this, though. If you can afford it and you've got the privilege of being able to, definitely give it a go.

But in the meantime, hang out here with us on this podcast because maybe we can help. And we do have a Google form now in our link tree that you can find. It's link tree. slash WTF is audio HD podcast. You can go and ask us questions there that we will get to eventually. And hopefully we'll talk about in some episodes.

Because we need more info out there, I think, because there's not enough research, especially about the ADHD combination. In the next few episodes, we're now going to dive a bit deeper into what is autism, what is ADHD, and what are the contradictions between the two. And therefore, what does audio HD look like? So the next few weeks will be actually getting into the scientific nitty gritty of it all. But do you have anything else you want to add to this episode before we get off for the day?

No, just thank you for following along and, you know, we're here for you. Yeah, thank you. Yeah, thank you for being here. And again, this was all just based on our personal experiences. Yours may be different. And we'll keep you updated with where the page gets the diagnosis through this route that she's now taken. And we're here for you. And follow us on social media if you haven't already. WTF is Audie HD. And we will catch you next time. Catch you next time. Thank you. Bye.

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