In The Media, Quackery, Scouting

Interview with Aut-ish on Discourse, Pseudoscience and Scouting

Aut-Ish: Episode 14 | Discourse |Special Guest: Amanda Seigler (Fierce Autie)

Accessibility notice and Intro Music – 00:00-00:25
For more accessibility, feel free to read the transcript as you listen. Available at: https://autish.wordpress.com

Onikage
Hello, and welcome to the Aut-Ish podcast. My name is Onikage. And this Autism podcast, like my blog provides various autistic content. I am autistic myself and I want to promote acceptance, and to explore various stories and personalities from the autistic community. This podcast will feature guests that are involved in the autistic community in some way. Today’s theme we will be exploring more on the discourse side, especially issues involving anti neurodiversity and pseudoscience. Ever since the whole Andrew Wakefield controversy. People started believing that vaccines cause autism, even though that has been debunked. The damage has already been done and people still believe it to this day. And a lot of parents don’t give vaccines to their children. I understand there’s special exceptions. Some kids can’t have vaccines, but a lot of them do and those children are not getting the attention they deserve. And they are causing more harm to others who can’t have any diseases like colds and such. Otherwise they’ll get very ill. And I find that very selfish.

Another thing is that they focus more on things like essential oils. There’s been a joke about it online, there’s memes and that, but essential oils are not curing things, focusing on air and magic and that does not help. Science is there for a reason. It’s to help us. It’s not to rain on your fantasy parade. And I feel that this also relates to the discourse, anti neurodiversity. We get dismissed as it’s being a trend. It’s just been trendy saying that “oh, we’re normalising autism”. so we’re making that a trend and leaving out those who really need it. That’s not what neurodiversity is about. Neurodiversity is a diversity of brains and I have stressed this enough so many times. Being neurodiverse is a diversity of brains, regardless of being neurodivergent or neurotypical. Neurodiverse is all the brains. being neurodivergent. Is those outside the norm, whether you’re autistic ADHD, or specific ones like dyslexia, dyspraxia, or any other difficulty out there. Apologies for not naming them. Some of these might not be discussed on today’s topic, but I thought I’d actually mention it because the theme is discourse. We should add in some positive things out there too in this discussion.

Amanda
My name is Amanda, Amanda Seigler, others know me online as Fierce Autie. I go behind the scenes, and I try to stop people from using industrial bleach otherwise known as MMS on their children and vulnerable adults.

Onikage
It’s great to give awareness about these things and I’ve seen it a lot In the news and throughout the world, even in the UK, there’s people trying to get MMS around saying, “Oh, look at this new cure,” and it’s like NO! YOU DON’T GIVE KIDS BLEACH!

Amanda
No, It’s very dangerous.

Onikage
It’s just- I don’t understand it. It’s like there’s so many quacks out there, and then all of a sudden they go “Look, we have got bleach”, and you’re just like, “What?” But Yeah, we’ll be talking a bit more on that soon. The first question I want to look into as well is: What are the current issues with like autistic advocacy, like in the community, because I’ve noticed there has been a lot discourse on that lately.

Amanda
There has been- there’s been a lot of fighting among advocates. We can’t really do what we’re doing effectively if we’re all fighting each other. It doesn’t do anybody any favours.

Onikage
No, I do agree with that. And I understand that everyone has differing opinions and different stances, especially if we’re all worldwide. But I do feel like sometimes there’s a bit of a playground mentality like someone may feel- it may seem like they’re better than others. I just don’t get it. That’s why I see myself in a neutral spot. I try and get along with everyone and if someone has different opinion, I just leave them be with that. I do understand both points of views and understand why they think of that opinion. But unfortunately, like all communities, some fights start over the most smallest of things and we don’t get taken seriously for that reason.

Amanda
Absolutely. I see that a lot. I was also born deaf. So I see that a lot in the deaf community as well.

Onikage
Yeah. I also see it in the feminism community and LGBT community, so instead of just autism, I’m like in three communities at once, and they all have the same glaring problems, that’s why I always say, every community has its own issues. But at the same time, we should all come together instead of separating each other.

Amanda
Absolutely. We’re all in this together, and we should be a team.

Onikage
Indeed, I agree with that. I noticed pseudoscience has been popping up a lot, especially in the autistic scene. And I’ve seen it pop up in many ways, especially in a problematic sense. Could you explain why pseudoscience is problematic, especially in the autistic scene?

Amanda
Okay, pseudoscience pops up a lot. People are looking for the next cure. There’s no cure for autism. There’s nothing to cure. But people take advantage of these parents were willing to do anything to help their children. And when they see a cure, they see something that is a solution instead of accepting their child for who they are, helping them through the difficult times, like any parent supposed to do. Lately, we see a lot of what they call Chelation, which is a valid medical treatment for lead poisoning or anything when you’re poisoned with heavy metals. But they still hang on to this idea that autism is caused by vaccines, and vaccines contain aluminium, which is not true. And instead, what happens when they administer the Chelation. It has to bond to something, so it bonds to all these vitamins and minerals, especially iron, which could make someone very sick. And then in 2008, there was a child who died from this particular treatment.

Onikage
That’s scary. (A: Mmhmm) Especially the whole pushing to the cure and don’t think of the consequences.

I don’t mind aids that help autistic children. It’s just the whole, promoting them as cures and such and various aids don’t help everyone. Like a lot of people claim (or) buy CBD oils or smoking weed or whatever. And I’m not against that. People can do what they want. And I know it can help with mental health and pain, but it doesn’t work for everyone and I see a lot of people pushing CBD when they go “Oh look, it’s a miracle. It’s helped this autistic child. It must cure them” it’s like no it doesn’t cure them. It helps their symptoms. It helps them cope, but it doesn’t cure them. It doesn’t change their neurology and once someone sees something that could potentially improve, they just go “cure” and it’s not cure. It’s support!

Amanda
They don’t understand it, I can actually compare it to say, one of my kids is a diabetic and he gets insulin. Insulin helps him. It helps him stay healthy, but it’s not a cure. (O: Yeah) You have to keep on doing it. As for CBD oil. I mean, if it helps you, great; but not enough research has been done on children to know the side effects of growing bodies. And to me that doesn’t seem like it’s worth the risk. If you’re an adult, that’s absolutely fine.

Onikage
I definitely think there needs to be more research on the child front, because I worry that when it comes to like medications or anything like that, and if it works, all of a sudden they start pumping it into the children without realising any consequence. And then when consequences do appear, they start boycotting it. And it’s like, “No, you need to be selective.” I definitely think needs to be more research in general.

Amanda
Absolutely.

Onikage
You mentioned anti vaxxers and the whole vaccines causes autism myth. When it comes to anti vaxxers, what problems are they doing to this day? Because I noticed there’s groups and there’s other groups making films promoting their propaganda. And…

Amanda
Oh Yes!

Onikage
I genuinely get upset every time I see them trying to promote this saying “look, it does cause autism” despite there have been records proving that it doesn’t.

Amanda
There has been hundreds of studies showing it does not cause autism, and there was one study that said it did but later, it was retracted due to fraud. The results were were falsified by Andrew Wakefield, who was not a doctorate. anymore, thank goodness.

Onikage
Hurray!

Amanda
And yesterday or the day before, I can’t remember which was the 10 year anniversary of the retraction, which was a really good thing.

Onikage
Yep!

Amanda
But yeah, they have this- actually two films of Vaxxed and Vaxxed 2. Vaxxed 2 just came out. And it’s a documentary on how dangerous (quote unquote) “dangerous” vaccines are. A friend of mine in the UK led a protest at one of the screenings, and they were bringing in children, babies. There was a little boy whose parents said that he had to see it. And my friend kneeled down saying “you’re not broken. You’re not damaged”. And the mother did not appreciate that. A lot of the kids of these parents. I can see them feeling how they are broken. Something’s wrong with them and growing up thinking like that is, it can be very damaging psychologically.

Onikage
Yeah.

Amanda
It’s almost like going through ABA twice.

Onikage
Oft, Yeah. And ABA is a total other ballgame that us autistic advocates are fighting against, and they’re trying to get it to the UK but try and use different words. They’re trying to be more sneaky about it compared to it in the US. I’ve not looked at recent stuff. And I’ve mentioned it before in my podcast, and they’re trying to be more sneaky. But no. Being told that you’re broken because you have something, whether it’s a physical or different neurological condition is sad. Dragging your kids to see a film that’s just scaremongering. It’s basically the Daily Mail, and it’s not nice. Funnily enough when it comes to like, the whole vaccines cause autism myth, I didn’t know about it until I was at university. I didn’t have a laptop yet, so I use my old Tiny smartphone as a mini computer and a notebook and books to study. And I found this medical podcast. And they were talking about random things each week. And one of them was about vaccines, and about Andrew Wakefield’s studies, how it was being retracted and how vaccines don’t cause autism. And I was just like, “Ah, that’s interesting.” And I’m glad (for) that person, it was nothing autism related. This is before I was even diagnosed. This person mentioned this, all the facts, and none of this opinionated. “Oh, I must be right” stuff. It was just refreshing to hear. And it’s nice to know that some people know that vaccines don’t cause autism. And I believe there is hope out there despite the anti vaxxers shouting louder than us.

Amanda
Absolutely. And a lot of people don’t know that idea wasn’t Wakefield’s original idea. Before he conducted that study, a person by the name of Rosemary Kessick started a group called “Allergy Induced Autism” and came to him with the idea. And a lot of people don’t know about her. So the idea wasn’t his originally, she came to him for help with that. He was trying to find a vaccine link to something because he wanted the payout.

Onikage
That’s a scary thing. A lot of people will just do these things for money and not think of the consequence. And that’s just gross. It’s like those who do want to do advocacy, but have a big ego or focus on funds and use autism-They parade their autism label, or they exploit their autistic children. It’s like both sides. There’s bad in all sides and whether you’re autistic or neurotypical, or other neurodivergence, and all the bad examples tend to get more attention and it’s quite scary, especially in this day of the internet, and that also leads on to the anti neurodiversity movement. There’s a group out there who are autistic and don’t believe in neurodiversity think it’s just a trending label, and that we’re just using autism as an identity and shoving out those who are more severe. And it’s like, that’s not what neurodiversity is. And they’re just spreading false propaganda saying that neurodiversity is like those in Tumblr, putting all these labels on going, “look at me. I’m autistic, I’m neurodivergent. I’m LGBT. I’m feminist. I’m all this! Look at me, I want attention.” That’s not what it’s about. And it’s sad because I use the neurodiversity logo on my Aut-Ish logo, because I believe in the diversity of the neurological brains.

Amanda
I do too. For the same reason. This world is diverse with so many different types of people. And if we were all the same, it would be boring.

Onikage
I totally agree. It would be so boring. I mean, there won’t be any clever ideas. It won’t be one of those extreme awesome ideas. You’ll just be like, “okay, we’re doing this” and we’ll be too busy listening to the bigwigs of society and that’s not good. That means we’ll be robots.

Amanda
No,

Onikage 

No one’s a robot. And we get called robots all the time. It’s just like “No…” but in a more positive topic, after all that discourse.

Both
*Laugh*

Onikage
Gotta love the discourse. You also advocate autistic kids being in scouting. Could you elaborate more on that?

Amanda
Absolutely. I was diagnosed at 31. But I always knew I was a little different. I was classified in the 80s, which was almost unheard of for girls being diagnosed with ADHD was very uncommon. So I guess I was one of the lucky ones. I was diagnosed with severe ADHD until adulthood and they knew better. But I was in Girl Scouts from age eight, up until 17. And it helped with communication, social skills without it being in an ABA environment. I went through ABA as a child It was not not pleasant. But scouting. I love being outside, being with other people who are not necessarily the same as you. You learn how to interact with other types of people. You got all like the sensory input from being at camp. I gained a lot from it. And I have all six of my children in scouting right now. I have three autistic children and three children with ADHD, with one son who is, I want to say he’s just like me. He was nonverbal until five and it was actually scouting that got him talking.

Onikage
Wow.

Amanda

So with All the different activities. He loves camping. He’s what’s considered a Cub Scout now, he’s 10. So he’ll be crossing over to Boy Scouts next year. So I took him camping with the older scouts a few weekends ago and he blew the- I guess the typical older scouts out of the water. He set up his own tent. He was asking the older ones what he could do to help. And he was way into it. That it was the other scouts are really impressed. “You’re only a Cub Scout?” “Yes, I am. What else Can I do?”

Onikage

Wow. That’s awesome to hear.

Amanda
So he had his tent set up before the older kids did.

Onikage
Wow.

Amanda
All by himself. Yeah.

Onikage
Well done *laugh*. That’s good to hear. I do genuinely think that neurodivergent kids should get more opportunities. When I was a kid. For me. I was stubborn with activities. My brain had this preconceived view of it before I even knew what it was.”Oh you wanna do dancing? eww” “you wanna do drama? ergh.”. But in the end, I did do drama. And I enjoyed it. It helped me meet friends, it made me, dabble in my more physical artistic side, which is like singing and acting. And I’m an artistic person in general. But in that way, as a kid, when you have all that energy, it really did help. Although I do feel like- the disadvantage of the group I was at, there was definitely a- putting everyone into groups like there’s like the more experienced ones, and then there’s the ones who don’t have as much experience, or they behave younger than they should. And I feel like a lot of us didn’t get a chance, and they tend to give up easily if you can’t do something. So it had it’s advantages and disadvantages, but the whole scouting story with your children, that’s definitely great to hear. And I feel like all parents should give autistic children opportunities. They can be what they can do. Whatever helps them and not ABA, because I am totally against ABA. And I know people that went to ABA, and it’s gave them trauma later on throughout their life which is not cool.

Amanda
No, it is definitely hard to deal with. So when my children in school sent home paperwork to start ABA, so you know what we did? we took it to the camp with us and it became a Firestarter. And then I had a nice talk with the school.

Onikage
Nice!

Amanda
Yeah, we-*laughs*

Onikage
I could just imagine the records and burning them, it’ll just be like “YEAAAH!!!!”

Amanda
*laughs* Yep, it was “mom, they sent us home with ABA. ABA is evil!” I said “I know.” We got more firestarters for the campfire. It’s fine. And then I’ll have another talk with the school and why, but after talking with the school so many times, now you actually have to sign something to be able to do it because, they go to- here in the US they have public and charter schools because the public schools, they don’t really- they’ve been cutting funding for public schools a lot. So charter schools receive funding. They’re like a private school, but they receive public funding.

Onikage
Right.

Amanda
And they have their own funding to be able to give the children a better education without having to charge the parents tuition, which is really the best of both worlds.

Onikage
Yeah. And finally, any other comments?

Amanda
No. We’re pretty thorough.

Onikage
No worries. I think we went through a lot today.

Amanda
We did!

Onikage
Definitely. Hopefully this isn’t too much for my viewers (listeners). But hey, if you read Aut-Ish blogs, and look at my YouTube, there is plenty of discourse. But yeah, thank you very much for participating. It was nice having you here.

Amanda
It was nice being here. Thank you so much.

Onikage
No worries.

Onikage (Outro)

Thank you for listening to the Aut-Ish Podcast. If you want to access everything Aut-ish, please access: https://Autish.carrd.co (Card spelt as C.A.R.R.D). Thank you for listening, and stay tuned for future episodes, This is Onikage from Aut-Ish, signing out!

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