Autism, ADHD, Anxiety and PCOS with Saxon Boone

Introduction: 

Welcome to the Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with Hidden Disabilites

Paul Shriever:

Hi, guys. My name's Paul. Today, we're going to be talking to Saxon Boone. Saxon is all the way from Canada North America. Can you please introduce yourself?

Saxon Boone:

My name's Saxon. I'm from London, Ontario, Canada.

Paul Shriever:

Can you please tell me what your health conditions are?

Saxon Boone:

I'm autistic. I have ADHD and I also have a condition called PCOS, which is polycystic ovarian syndrome.

Paul Shriever:

Can you tell me a little bit more about polycystic ovarian syndrome, please, or PCOS?

Saxon Boone:

Essentially, it is pretty self-explanatory. You have polly, which is multiple cysts on your ovaries. They can affect everybody in a number of different ways. For me, I get a really bad cramping, even outside of my periods. I also experience different hormones. I get excess amounts of androgen or testosterone, which has to be managed through medication, otherwise, it kind of makes everything go a little bit haywire.

Paul Shriever:

Is that something that you've had for many years now or is that something that's just recently come on?

Saxon Boone:

It's something that runs in my family. I believe we got that checked out when I was kind of an older teenager, young adult, because we had a feeling it was probably in the family line.

Paul Shriever:

Is it something you have to get regular treatment for?

Saxon Boone:

I have to take medication regularly. I get blood work pretty frequently to keep track of a bunch of different things, but one of them is how my hormones are balanced, just because that's the easiest way to keep track of health like that.

Paul Shriever:

So it's just something you've got to live with on a day-to-day basis and something you have to monitor?

Saxon Boone:

Yeah, pretty much.

Paul Shriever:

Okay. And how can that impact you on a day-to-day basis?

Saxon Boone:

The hormone imbalance can definitely be really tricky. Like I said, I do have it fairly well managed right now with a mix of medications, but obviously when you have excess amounts of androgen, it can kind of just screw up a number of things in your body, including your mood, which doesn't really play well with my other conditions. And the cramping can really suck, especially because it can occur outside of my periods. So then I'll be going about my day and all of a sudden I get some really bad cramps that I have to kind of just sit down and wait for them to go away.

Paul Shriever:

So it's about dealing with your condition essentially on a day-to-day basis, essentially?

Saxon Boone:

Yeah.

Paul Shriever:

How does the autism and ADHD or anxiety, how does that all kind of cross over? Does one impact the other?

Saxon Boone:

Oh, absolutely. With my ADHD, I know I can get very irritable and impatient. And then again with excess and Virgin, it can really aggravate that further, which I don't like, because I don't like to be an irritable person. I don't want to be very short with people. I like to try to be as nice as I can, but sometimes it just kind of flares and I get really frustrated

Paul Shriever:

And because it's hidden, people don't see that and they don't understand it?

Saxon Boone:

Yeah. Especially along with being autistic too, is my mood can vary so much all the time, especially with different environmental factors. And I know that's something that when I go to the store, especially not a lot of people will immediately understand is like, well, why am I maybe not the most patient with other people? Or like I'm not intending to be rude or why am I always wearing these big bulky headphones and playing music, it's because I need to, and this is how I get through my shopping.

Paul Shriever:

So you have your own kind of coping mechanisms?

Saxon Boone:

Yeah, pretty much.

Paul Shriever:

Are there any other day-to-day challenges you face with your conditions?

Saxon Boone:

I really struggle with executive dysfunction, which is, it has like a number of related problems, but a lot of it is kind of task-oriented. I can be starting tasks, finishing tasks, motivation to even do things, which it can be things you have to do like chores and errands, but it can also be things that you like to do, like engaging with your hobbies. And especially throughout the pandemic, that's been something that I really struggled with.

Chantal Boyle:

You are listening to The Sunflower Conversations with Paul and Chantal. To learn more about the topics covered in today's podcast, details are in the show notes.

Paul Shriever:

With time, have your conditions got any easier?

Saxon Boone:

Definitely think I've had to learn a lot of my own coping strategies, because for a good chunk of my life, when I was first diagnosed, I was refused a lot of accessibilities.

Paul Shriever:

Such as?

Saxon Boone:

Well, when I was first diagnosed, they just straight up told my mom, they didn't believe I was autistic. They just thought I was a problem child. So it wasn't until I left elementary school and got into high school that I actually started getting proper accessibilities and help. And it was through, partially through them, but definitely a lot of my own work in just kind of learning how to cope and manage and how to engage better in my own way.

Paul Shriever:

How has the pandemic affected you and what have the restrictions being like in Canada?

Saxon Boone:

Every single province in Canada has their own different restrictions. Where I live it's been kind of rocky. We're finally getting to a better spot now the vaccines really rolling out and we're slowly starting to acclimatize, but the past year has definitely been pretty difficult, especially for someone who lives on their own.

Paul Shriever:

Saxon, you just mentioned that you're living on your own. Is that something that through the pandemic has that caused?

Saxon Boone:

Yeah, definitely the fact that I got very lonely because a lot of my family doesn't live in the same city as me anymore. So there are a lot of times where I was very used to seeing my family frequently and all of a sudden, I hadn't seen them for months on end, except over FaceTime.

Paul Shriever:

Have you been vaccinated yet?

Saxon Boone:

I have got my first vaccine and I'm actually getting my second dose today.

Paul Shriever:

Awesome. And do you have to get like a little certificate or like a card that tells people that you've been vaccinated?

Saxon Boone:

Essentially, yeah. They'll send me an email after it gets done, and that just shows and confirms that I have both my doses.

Paul Shriever:

What are your interests? What are you in to?

Saxon Boone:

I have a lot of interests. It's part of, I think part of the, I wouldn't say the downside, but definitely part of having ADHD is you pick up so many different interests, but I think my main ones, I really like to sew and craft, do stuff like that. I'm really interested in playing different types of games, video games. I play Dungeons & Dragons pretty frequently with some friends.

Paul Shriever:

Is it a lengthy game? Can you spend hours doing it?

Saxon Boone:

The average we'll play per night is maybe about five hours and you can have games that go on for weeks, months. There's a guy in my city who has had a continuous game going on for, I think more than 20 years.

Paul Shriever:

I can't get my head around how you can play a game for 20 years.

Saxon Boone:

I know it's crazy, but I think that what's part of what's so amazing about this game is there's so many different possibilities. They're constantly putting out new stuff that there's always something for you to do.

Paul Shriever:

Were you diagnosed for any of the conditions you have?

Saxon Boone:

I have been diagnosed with PCOS. I am diagnosed with autism and I am diagnosed with ADHD.

Paul Shriever:

Was that something that you had to wait a long time for?

Saxon Boone:

Definitely getting those diagnosis, autistic took a while because that's obviously a very difficult diagnosis to officially achieve because there's so much going on with it and there's so many different symptoms. That took, I want to say at least five years when I was a lot younger. The ADHD has been in the process for about a year now. I only recently got that diagnosis. It was because living alone during the pandemic, I just started to notice things that a lot of my friends with ADHD were talking about and it started to mount to, oh, maybe this isn't something I thought was related to being autistic, maybe this is something else.

Paul Shriever:

It's interesting how something that takes significant time to kind of, I don't know, to work out. Right?

Saxon Boone:

Mm-hmm (affirmative).

Paul Shriever:

From it's being something in you to then going, right, I think there's something wrong. I don't know quite what it is, to then thinking it might be this, to then talking to a doctor that's then getting it probably diagnosed. It can be years, can’t it?

Saxon Boone:

Oh, it's so much work. And even then it doesn't stop once you get a diagnosis, because treatment in itself is such a lengthy process.

Paul Shriever:

By recognizing that you have a condition, does that then help you dealing with it?

Saxon Boone:

Oh, absolutely. And I think that is kind of related to being autistic that I like an order with things, having a name for something really gives me a peace of mind knowing that, okay, I have a name for something. I can get a better understanding of what this is. I can look at symptoms and I can relate to them a lot easier than just trying to guess what's going on with me.

Paul Shriever:

Yeah, that's interesting to hear because it's giving you an answer essentially, and that helps you come to terms with it. And then it's like the next step. And then you can go, right, well, I know I've got this. I can now work out what to do next.

Saxon Boone:

Yeah, exactly.

Paul Shriever: 

You are listening to the Sunflower Conversations with Paul and Chantal. To learn more about the topics covered in this podcast, details are in the show notes.

Paul Shriever:

But can I ask you, what are your hopes for the future?

Saxon Boone:

That'd be nice to have some stable work, doing something I really enjoy. It'd be nice to know that I can keep paying my rent and putting food on the table. And just eventually it'd be nice to have a partner, but I think for right now, I really want to focus on just my own improvement and just making sure that I'm healthy and happy.

Paul Shriever:

Have you heard about the Hidden Disabilities Sunflower?

Saxon Boone:

Yeah. So, originally where I heard of it actually was a lot through social media, especially Instagram. I just started seeing a lot of people, whether they were also autistic or they had other hidden disabilities from the UK and Australia talking about the Hidden Sunflower. And I started to kind of look onto these people's pages and have them, like they would have a page or a video or something explaining like, here's what this is and here's what it does where I live. And it was like, I thought that was so cool. So my first thought was like, I wonder if that's anywhere in North America yet.

Paul Shriever:

Is it something that is recognized at all in Canada?

Saxon Boone:

The only place so far that I think recognizes it in Canada, that I know of is Toronto's Pearson International Airport, which is a great first step considering it means the next time I get to go travel and I go to the airport that the employees there will understand what this is. But as far as I can tell, not really anywhere else does it yet.

Paul Shriever:

Do you feel that the Sunflower is needed in society?

Saxon Boone:

I definitely think so, because like I said, my own experiences of having people not really understand my experience when I have to go places and do things like errands and just doing my shopping, it would make a huge difference to have both employees and maybe more of the general public understand what this means and what they can do to be a bit more accommodating to the people who wear it.

Paul Shriever:

Do you feel you need then a visual indicator?

Saxon Boone:

Yeah, I think it's very helpful just because it's subtle enough that people can look at it and it's not a big sign. It's not a big button that has to tell them everything about me. It's just something simple to say, I have a hidden disability. I just need maybe a bit more patience, a bit more space, whatever a stranger can just do to try to accommodate me or anybody else a little bit better.

Paul Shriever:

Do you have any advice or coping mechanisms for anyone who finds herself in a position similar to you?

Saxon Boone:

As long as you can try to find something to keep you going each day, as small as it can be, whether it's just, there's an episode of a TV show you really want to watch next week or whether it's you know you're going to see some friends or family soon, it's important to just have something to keep you going each days, that way you can just keep going and all the days really start mounting behind you and you're moving forward.

Paul Shriever:

If somebody sees you wearing a sunflower, what reaction would you like?

Saxon Boone:

That they know that I maybe need just more patience, that I have accessibilities and even if they can't meet my accessibilities specifically, again, just like the minimum support you can have is just patience and the general understanding that somebody might be having a tougher time than they appear to be.

Paul Shriever:

Thanks ever so much for your time.

Saxon Boone:

Thank you. I really, really enjoyed this.

Outro: 

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