Refrigerator Moms

Hosts Julianna Scott and Kelley Jensen address listener feedback on the title of their episode on siblings, clarifying their intention wasn't to pit neurotypical against neurodivergent siblings, but rather show all siblings united against the challenges neurodivergence can bring to family dynamics. They discuss their recent op-ed about RFK Jr.'s autism statements, emphasizing support for productive autism advocacy while rejecting debunked vaccine theories. The conversation covers the need for standardized diagnostics, better services for severely autistic individuals, and the importance of keeping all autism levels visible in media representation. Julianna reviews the PBS show "Patience" featuring an autistic actress, and Kelley introduces the concept of "virtual autism"—screen-induced autism-like symptoms in neurotypical children under three.

Key Takeaways:
  • Siblings want platforms to share their experiences living with autism.
  • Vaccines don't cause autism—this is settled science.
  • Standardized diagnostics need improvement.
  • Severely autistic individuals are fighting for services they shouldn't have to fight for.
  • Media representation often focuses on high-functioning autism, overlooking severe cases.
  • "Virtual autism" describes screen-induced autism-like symptoms in young children.
  • Quality autism diagnosis needs more clinical involvement and funding.
  • Autism advocacy requires focusing on productive solutions over debunked theories.

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Creators and Guests

Guest
Julianna Scott
Guest
Kelley Jensen

What is Refrigerator Moms?

Born from 20 years of friendship, during which they navigated the trenches of autism parenting and advocacy, the Refrigerator Moms is Kelley Jensen and Julianna Scott’s way of reaching out to parents waging the same battles they were.  Their purpose with this podcast is to clear the fog, silence the noise, and find a path through neurodivergence for parents that are stuck between bad choices. They tackle parenting topics such as mom guilt, tantrums, pathological demand avoidance, siblings, medication, comorbidities, social media, and much more. 

[Kelley] (0:10 - 0:24)
Joanna, we did a paper and an episode with our darling children all about siblings because siblings and autism neurodivergence are a very important issue and we had some feedback.

[Julianna] (0:25 - 0:30)
We did. And right out the gate, we had feedback on our title. Wow.

[Kelley] (0:30 - 0:31)
What is the title?

[Julianna] (0:32 - 0:37)
The title is Oh Brother, Oh Sister, Siblings vs. Neurodivergence.

[Kelley] (0:37 - 0:38)
What was the issue?

[Julianna] (0:38 - 0:40)
The issue was the versus.

[Kelley] (0:40 - 0:40)
Oh.

[Julianna] (0:41 - 1:24)
Yeah. Yes. And not the kind of issue that I have as an editor, which is whether it should be spelled out versus VS period.

I notice on my notes it's spelled out. Yeah, it's because I wrote that. You're right.

But no, that isn't the issue, but I would debate that. Well, I don't. I know you do not want to debate that.

But what the issue with the versus is, is that versus sometimes implies an adversarial relationship. And the feedback was, isn't this pitting the neurotypical sibling against the neurodivergent sibling?

[Kelley] (1:24 - 1:26)
Oh, I see. That really wasn't our intention.

[Julianna] (1:27 - 1:30)
No. But what was our intention by setting it up that way?

[Kelley] (1:31 - 1:48)
It's sort of like neurodivergence taking precedence over family relations, right? So you join as a family that siblings, all the siblings, whether or not they are autistic or again, versus the attention of neurodivergence get.

[Julianna] (1:49 - 1:53)
So siblings include the autistic sibling. Yes.

[Kelley] (1:53 - 2:04)
We're all bound together to combat this relationship killer, which is what neurodivergence can be. It can be. It also can be a source of joy.

[Julianna] (2:04 - 2:49)
Let's not. Yes. It's autistic joy.

It's all about communication. This episode of Refrigerator Moms is brought to you by Brain Performance Technologies. Brain Performance Technologies is a specialty mental health clinic that offers magnetic e-resonance therapy, or MERT, for autistic people age three or older.

MERT is a transcranial magnetic stimulation protocol that utilizes an EEG diagnostic to deliver personalized magnetic pulses to stimulate the brain and build neural pathways effective in managing autistic symptoms. What excited me about doing that episode with them is, for one, it wasn't like I had to pull teeth. I mean, I asked him if he wanted to participate and he's like, yeah, he's like, ask me anything.

Which is great. Yeah. And I don't think Rosalie.

[Kelley] (2:49 - 2:52)
Oh, she was awesome. She wasn't bad in the eye either. No, no, no.

Yeah.

[Julianna] (2:52 - 3:00)
So, you know, and maybe that is just indicative of, you know, siblings wanting to be heard.

[Kelley] (3:00 - 3:00)
Be heard.

[Julianna] (3:00 - 3:09)
Yeah. You know, so maybe it was a failing of mine that I didn't recognize that he wanted a platform as large as he could get to say, hey, yeah, this was really tough.

[Kelley] (3:10 - 3:15)
I think, don't make assumptions that they don't want to talk about it anymore. Even when they tell you they don't want to talk about it anymore.

[Julianna] (3:15 - 3:23)
I mean, yeah, they don't want to talk about autism all the time. No, but they want to talk about their experience as well as they should.

[Kelley] (3:23 - 3:43)
So we also have been in the news a little bit. We wrote an opinion piece on some of the more outlandish things that RFK Jr. has been saying. And while it got a lot of attention and certainly a lot of support, we had some really nice responses from people.

[Julianna] (3:43 - 3:50)
We did. And I want to make a little note, the person who encouraged us to write an op-ed was my autistic son.

[Kelley] (3:51 - 3:51)
Fantastic. Right.

[Julianna] (3:52 - 3:52)
Yes.

[Kelley] (3:52 - 4:41)
So we don't want to come across as some sort of political force that is against everything that RFK Jr. is saying and doing. We certainly recognize that the opportunity to put us autism front and center and to call out a lot of the keeper of the keys, as I like to call them, that have not done enough and have no excuse for the lack of progress in autism research and autism understanding and autism services. He is in a unique opportunity to do all those things.

And we are not looking for saints. We're looking for soldiers. We would love him to be just that person.

We just don't want him to go backwards. We wanted to grab the bull by the horns and talk about some of the things that should take precedent over the things that have long been settled.

[Julianna] (4:41 - 5:38)
He may not be the one to do it, but we welcome him. The silver lining is, autism has been in the news a lot. I have a Google alert for RFK Jr. in autism every day, and it's not always the same stories. So just to get it out of the way, we're not going to beat a dead horse. Facts are facts. Vaccines don't cause autism.

RFK Jr. is barking up the wrong tree. Kennedy is spending way too much time to set it up so he can say in a few months that vaccines cause autism. We're not down with that.

So let me make it clear. But that said, if we're going to start the conversation about autism and what the government can do, let's talk about that.

[Kelley] (5:38 - 6:09)
Yeah, and one of the things about him being such a boisterous person is he can have the conversations that, you know, we have this whole thing, diagnose and adios, and it's not right. And he's a person to call those people on the carpet, and they should be called on the carpet. So one of the things we'd like him to do is rally for more standardized diagnostics, more genetic testing, and re-diagnosis, re-examinations, and quality of diagnosis, right?

[Julianna] (6:09 - 6:23)
Right. I mean, obviously the numbers about the number of diagnoses going up is interesting. Again, it doesn't go back to vaccines.

Diagnosis is definitely a factor. I think everybody's agreeing that diagnosis is a factor.

[Kelley] (6:23 - 7:16)
And there needs to be a better way. And there needs to be more involvement at the clinical level. We think there's some very promising therapies out there.

There's a lot of people doing good work and doing different things that are not getting the attention or the funding for research that they deserve. He has an opportunity to throw some money their way, and he should. And you know, we'd love an opportunity to tell him the things that we think should be getting more attention.

And one thing that you know that is very close to my heart is that this new thing about lumping severe autism into all other versions of autism, all other levels of autism, that community, the severely autistic, profoundly autistic people have really struggled to keep a flow of services going for them. Yes. And it's not right.

[Julianna] (7:16 - 8:09)
Yes. And that is one thing that he is getting praised for, is that a lot of parents of people with severe autism are saying, yeah, I don't like him either, but you know, he's talking about my kid finally. And that is really important to keep those people front of mind.

Because now, it used to be where nobody was talking about autism, and then only, like were sort of the savant reign mankind. And now that person, that kind of trope, and in the real, in the very real people with severe autism have been kind of put aside. And instead, Hollywood media is really focusing on those who are at the other end of the autism spectrum.

[Kelley] (8:09 - 8:09)
The high functioning.

[Julianna] (8:09 - 8:15)
The high functioning end. And the severe autistic people have really kind of disappeared.

[Kelley] (8:15 - 8:30)
And are fighting for services they shouldn't have to fight for. Right. So we welcome discussion.

We welcome the opportunity to shine a light on some of these things. We will continue to do that, right? Yep.

You have a new autism TV show?

[Julianna] (8:30 - 9:34)
Speaking of Hollywood tropes, but I am going to say I really enjoyed it. It is a show called Patients on PBS. I binged it.

It definitely follows the trope of an autistic, but a nice young woman, which is nice. And she's also played by an autistic actress. And she works in the criminal records department.

This is set in, oh, I'm going to blow it. It's in the UK. It's in the UK.

I don't know exactly where. Oh, no, I do know York. But it was a beautiful setting.

But she has, of course, you know, an incredible memory and she is, you know, a puzzle solver. And so she ends up helping solve some cases. But what I really liked about it is she really understands her autism and tells people what she needs.

And she goes to this adults with autism support group, and it's kind of cool to see all those people in that support group. So I actually really enjoyed it, despite the fact it's like yet another like, oh, she has an amazing skill.

[Kelley] (9:35 - 9:38)
Well, that makes for good TV. Yes, it does.

[Julianna] (9:39 - 9:48)
But Kelly, you recently introduced me to a term I had never heard of, and it is virtual autism.

[Kelley] (9:49 - 10:27)
Virtual autism. Yeah. Are you curious about that?

I'm very curious. We are going to be talking about a little bit more. Virtual autism is the concept founded by, I think, a Dutch scientist.

We'll get into it a little bit more, 2018. But his observation is that there are neurotypical people that developmentally, before the age of three, have been exposed to so many screens that they have sort of a virtual autism. It's not a true autism.

It is a screen-induced autism, a virtual autism. All right. I'm looking forward to talking to you about that.

It's certainly a buzzword and certainly provocative, isn't it?

[Julianna] (10:27 - 11:42)
All right. Okay. Thanks for listening.

Thank you for listening to this episode of The Refrigerator Moms. We have a free download that includes a full list of practical to-dos we shared in this episode on our website. Our refrigerator paper, our version of the white paper, includes additional what-would-we-dos and background information on everything we talked about today.

Find it on our website, RefrigeratorMoms.com, where you can also sign up for our newsletter. We'd also love to hear your questions. Send them in along with future podcast topics by connecting with us on your favorite social media.

Thanks for listening. Please note that the information provided in this podcast is for informational purposes only and it is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.

Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions and views expressed in this podcast are solely those of the hosts and guests. Any recommendations or suggestions made are based on personal experiences and beliefs and should not be taken as definitive advice.

It's important to consult with appropriate professionals for personalized guidance. A full list of citations and sources for this episode can be found in our refrigerator paper available on our website.