The Try-entific Method: Off-Label Autism Interventions

Hosts Julianna Scott and Kelley Jensen tackle the common "diagnose and adios" experience that leaves autism parents without guidance after diagnosis. They discuss how parents must become researchers themselves, using what they call "The Try-entific Method" to navigate off-label treatments. The hosts share personal experiences with brain stimulation therapies like MeRT and EMDR, provide practical financial advice including ABLE accounts, and emphasize that there is no cure for autism—only ways to improve function. They offer a roadmap for evaluating treatments safely while avoiding dangerous interventions.

Key Takeaways

• "Diagnose and adios" is the common experience of receiving an autism diagnosis without treatment guidance.
• Parents inevitably use off-label treatments because only two FDA-approved medications exist for autism. 
• Establish ABLE accounts immediately after diagnosis for tax-free savings on disability-related expenses.
• There is no cure for autism—focus on improving function and managing symptoms.
• Brain stimulation therapies (MeRT, TMS) show promise for comorbid conditions like OCD. 
• EMDR can help with trauma processing and anxiety reduction in autistic individuals.
• Always exhaust insurance-covered treatments first before pursuing expensive alternatives.
• Evaluate treatments critically and avoid anything promising a "cure." 
• Progress continues throughout life, even if slow—reassessment is crucial as children age. 
• Safety first: Avoid dangerous treatments like chelation therapy, hyperbaric oxygen, and restrictive diets.

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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 Jensen] (0:10 - 0:36)
Diagnose and adios is an experience that too many parents of autistic children have at that diagnosis appointment. It's so common that you and I have written an episode about it. It's called The Trientific Method Off-Label Interventions for Autism.

I am Kelley Jensen. This is Julianna Scott, and we are the Refrigerator Moms. So Julianna, what does diagnose and adios mean?

[Julianna Scott] (0:36 - 0:59)
Yeah. Diagnose and adios, very common. You go to a doctor to get a diagnosis for your child.

You suspect your gut is telling you something's wrong. You go, you get the diagnosis, and then you're sent on your way. You aren't really given a plan.

You aren't given any starting point, maybe a couple suggestions, but nothing specific.

[Kelley Jensen] (0:59 - 1:02)
Evidence-based. It's usually the same trite therapies.

[Julianna Scott] (1:03 - 1:18)
Or just the very basics. So then you're left to try everything you can, which is why we're calling this The Trientific Method, because that's what parents have to do.

[Kelley Jensen] (1:18 - 1:36)
They have to sift through a bunch of information, some good, some useless, a lot of midnight Google searches, and you piece together a plan for your child, all on your own pretty much, or with the help of good friends and a knowledgeable family.

[Julianna Scott] (1:37 - 1:39)
What was your experience with diagnose and adios?

[Kelley Jensen] (1:39 - 2:32)
It was for sure diagnose and adios. My son was two and a half. He was speaking in a very kind of classically autistic way, where he'd say an expression, and then you'd never hear it again.

Seemed to be losing words, but then seemed to have very sophisticated words. It was the classic non-language development for autism. So I pretty much knew something was wrong, and I needed to formalize it.

And I was up at night worried, and I wanted the best. The best I could get for my son. And so we're lucky enough to live in an area with lots of fancy credentialed psychiatrists and psychologists, and so I went to the best of the best for her assessment.

And I will say that she did an excellent job of observing him. It was a full three-day affair of questionnaire after questionnaire for my husband and I to fill out separately, which is important.

[Julianna Scott] (2:32 - 2:33)
The first of many.

[Kelley Jensen] (2:33 - 3:26)
Yes. Oh my gosh. And then observation of him, and then that fateful day where we got the diagnosis.

And I mean, I knew something was wrong. I knew it had a name, but I was there to figure out what to do and how to help him, and that information never came. And it left the worst taste in my mouth for these highly educated people that don't do the work with autistic people.

They just do the diagnosis. I was shocked. I had no clue, but I was very much diagnosed.

I think I had gotten one flyer, and I was sent on my way trying to navigate insurance. And back then, it was a little bit more complicated because there were pretty much no therapies. You got 20 sessions of speech therapy, but ABA was not a given.

All of these things that parents have fought for largely because they were in those rooms with the diagnosis and audios crowd.

[Julianna Scott] (3:27 - 5:26)
It was a miserable experience. Yeah. Well, similarly, we suspected something was going on.

Actually, I went into the pediatrician's office, and I think on one of his regular checkups, he had been born prematurely, so he was already not hitting developmental milestones. So that wasn't a surprise. But his, what I thought were tantrums were actually meltdowns.

And I brought it up to the pediatrician, and she sent me to a psychologist who then red-flagged autism, but just said, you need to go get a diagnosis. So same as you, we live in an area. I'm like, okay, where can I find the best?

And we went up to UCSF. She was renowned, so we went up, got our diagnosis. And again, his diagnosis was PDD-NOS.

So for those people like us who are in the DSM-IV years, PDD-NOS, so that was even more vague. So we got this diagnosed, this label that wasn't even just straight up autism. It was like autism spectrum.

We didn't even call it that exactly. So we were even more confused, but we knew it was a form of autism. And I just remember looking at her when she told us this, and I said, well, and she said, well, you know, you're going to have to figure it out.

Like tell me about early intervention and all these things. I was just kind of in this blur. And I did say to her, and this was in January of when my son just turned two.

And I said, well, I'm going to start law school in the fall. And she says, well, I don't think so. And that was really, I was just like, oh.

And she's like, no, you're going to have another job.

[Kelley Jensen] (5:27 - 6:10)
She said the same, I remember, and I'll never forget this. She said, just treat it like a second job. Just organize it like you would a second job.

And I just thought, wow, I paid all of this money for all of this expertise for you to tell me. One, I already knew something was wrong. And two, for you to tell me to figure it out.

And I mean, I don't need any help on how to organize my thoughts and how to organize my life. I came here for ideas. I came here for interventions.

I came here for you to tell me what to do. Not even give me all of the ideas, just give me some direction. And I got none.

[Julianna Scott] (6:10 - 6:20)
I got, okay, now that I'm remembering, I got two suggestions. One was to do ABA. Of course.

Which I didn't even know what ABA stood for. I wrote it down. I'm like ABA.

[Kelley Jensen] (6:20 - 6:25)
And then- You certainly didn't get a referral to a company. You certainly didn't get any roadmap for insurance navigation.

[Julianna Scott] (6:25 - 7:40)
Oh, absolutely not. And I said, well, where do I do that? And she had someone working with her, they have a lot of people working with their kid during the evaluations, the observations.

And one of those women had just started a clinic. And so I just grabbed onto that. And I didn't do any more research.

I was like, sign me up. Like, I guess this is what I do. I didn't do any of the research.

Turned out to be a good choice. But regardless. And the other thing is she told us a computer program and it was basically cause effect.

And I'm just like, and once we ordered the program, this is again, before touchscreens, we had this whole thing set up. And I'm just like, wow, is this what she thinks he's capable of? Like- Yeah.

She didn't spend any time with him. And so I remember my husband and I were just shocked that these were the, this was the one of two things she'd recommended. And it really showed not a lot of confidence that he would make a lot of progress.

And so that was also very disheartening along with the fact that, you know, we were told that, you know, based on this little information, just this diagnosis that he would probably not go into a mainstream class. We were just like trying to grapple with what this all meant. And at two years old telling us that he wouldn't live independently, all these things.

[Kelley Jensen] (7:40 - 7:49)
So- Well, you know, they tell you that on the one hand, they give you the worst case scenario, and then they tell you, don't think more than five years ahead. Well, how are you going to do that?

[Julianna Scott] (7:49 - 8:15)
You're telling me he's- He's not ever going to, you know, hit any of these milestones. So needless to say, those car rides home, you know, you're just not only grappling with, oh, my life is really taking a turn down a different road, but now I need to, apparently I've just been given a full-time job that I don't think I'm qualified for.

[Kelley Jensen] (8:15 - 8:35)
So- So then what do you do? Where do you start? Take a deep breath.

And then you start talking to people and you start Googling in the middle of the night when you can't sleep. And you find out about these off-label treatments and options, and you want to know what they are, right? So is that why people seek off-label treatments?

What happens? Yes.

[Julianna Scott] (8:35 - 9:18)
Well, they do seek off-label treatments. Let's start with what's on-label? Well, the reason people seek off-label treatments is because there are only two FDA-approved medications and few treatments covered by insurance.

And so the two off-label, or two on-label, two approved medications, we talk about that in our medication episode, there's only those two. And then we've got the few treatments covered by insurance are ABA, that was hard one. Hard fought.

Do you even get that? Yeah. Speech and some OT and physical therapy if deemed medically necessary.

So that's it. That's it. So you need alternatives.

[Kelley Jensen] (9:18 - 9:19)
Right.

[Julianna Scott] (9:19 - 9:40)
And so when you're seeking evidence-based treatments, you often find yourself there's not a lot of research available. Maybe it's behind a paywall. That's another thing.

I'm still butting up against that. So you're kind of left with no choice other than to experiment with some of these off-label treatments to find out what works best for your child. Right.

[Kelley Jensen] (9:41 - 9:56)
And with the off-label treatments that you investigate, you go to get counsel from your doctor and get no quite a bit, don't you? Why don't they tell you, try it? What is the disconnect there?

[Julianna Scott] (9:56 - 10:05)
Yeah. Well, a lot of times they don't even know what the off-label treatments are. And we're even told like, they're not in the field, like we're in the field more than they are.

[Kelley Jensen] (10:06 - 10:06)
Yes.

[Julianna Scott] (10:06 - 10:31)
And certainly the ones that are diagnosed and waving you out the door, they're not keeping up on the trends. It's not really in their wheelhouse. I mean, they're just diagnosing.

Treatment's a whole different animal. So they also, some doctors don't want to prescribe off-label drugs. They want to just prescribe...

[Kelley Jensen] (10:32 - 10:34)
Well, but they all do, don't they?

[Julianna Scott] (10:34 - 10:34)
Yes, they do.

[Kelley Jensen] (10:35 - 11:10)
Of all of the children that take medication, again, this is more, we go into this in our medication paper, but if you do nothing else but go to what the behaviors are that you're trying to alleviate, you're pretty much off-label. And the doctors will acquiesce and you will find yourself with SSRIs and anxiety medications that are not on-label for autism, because again, there's only two that are on-label for autism. So every parent is off-label.

And the medical community seems to accept when they're off-label for medication, but not much else, right?

[Julianna Scott] (11:10 - 11:18)
No, and there's so many snake oil treatments out there. They don't want to end up sending you down those roads.

[Kelley Jensen] (11:18 - 11:23)
They don't want to figure out who is a snake oil salesman and who is doing some good work.

[Julianna Scott] (11:23 - 12:15)
Yes, some real work. So they often don't want to do that. And they often just aren't educating themselves, like you said, on the treatments that work, because it's not really their responsibility.

Certainly the diagnosticians, they're not following up their child. We never saw... Actually, we went back to her once because we wanted a couple of years later to see if he actually got the autism diagnosis.

And we'll get into that. That's a whole other topic about what diagnosis you want. Yes, right.

So we went back with our PDD-NOS diagnosis, which does roll off the tongue. But other than that, we never saw her again. So she's certainly not following up.

So it doesn't really follow that they would be tracking trends and tracking progress and seeing what's really working.

[Kelley Jensen] (12:16 - 12:59)
They're just the keeper of the key saying, no, I never saw the gal that diagnosed us. I did, of course, get invitations to her speaking engagements, which I politely declined, because what was she going to tell me that she hadn't already told me? Sometimes what I will say, and I did eventually, but I just went to someone else.

As they age, you're getting a very young child diagnosed, and autism is the primary diagnosis, but there are comorbidities associated with these. And they present as the child ages, as life gets more complicated. And so you have to get comfortable with reassessment and fine-tuning, adding OCD, anxiety, ADHD.

[Julianna Scott] (12:59 - 13:01)
Which we did with our psychiatrist.

[Kelley Jensen] (13:01 - 13:10)
Yes. So I moved towards a psychiatrist that we both have much love and affection for. We always talk about her.

Our dream is for her to come on here.

[Julianna Scott] (13:11 - 13:11)
I know, I know.

[Kelley Jensen] (13:11 - 13:29)
But yes, I find her much more helpful and in the game and rolling up her sleeves to work with me than the gal that diagnosed us. Like there's lots and lots of follow-up with a psychiatrist like that. I never went to hear the speaker.

I would, though. Oh, well, I wouldn't. Why?

[Julianna Scott] (13:29 - 13:32)
Oh, no. Oh, if our psychiatrist was going to speak?

[Kelley Jensen] (13:32 - 13:35)
She spoke, but she was too busy working, so she couldn't speak.

[Julianna Scott] (13:35 - 14:02)
I digress. 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.

[Kelley Jensen] (14:03 - 14:11)
So how come there are no more? So many of these off-label treatments are not funded for more research, for further research. Right.

[Julianna Scott] (14:11 - 14:28)
Well, funding ultimately goes toward research that is likely to succeed, the most likely to succeed treatments. So research that's well-backed by previous research. So that kind of leaves you in this weird no-man's land.

Kind of the circle dealer.

[Kelley Jensen] (14:28 - 14:28)
Yes.

[Julianna Scott] (14:30 - 14:54)
And... Needs more study. Right.

Needs more study. Shows promise, needs more study. We can't lose the opportunity to say the current administration, also known as RFK Jr., his political agenda opposes autism research in an effort to advance his anti-vaccine propaganda. So if you would like...

[Kelley Jensen] (14:54 - 15:07)
RFK Jr., if you would like to do something with our off-label paper and read the promising treatments and fund those, we applaud that opportunity.

[Julianna Scott] (15:07 - 15:13)
Yes. I don't know if it's going to be falling on deaf ears. I think a lot of people have been asking him to do that.

[Kelley Jensen] (15:13 - 15:13)
Yes.

[Julianna Scott] (15:14 - 15:21)
But, you know, those people and those... Obviously, he in that position is controlling a lot of the funding.

[Kelley Jensen] (15:21 - 15:32)
Well, he's certainly not the only one. There are research institutions. There are institutions of higher learning that could have and should have funded autism research because it's the right thing to do, and they don't do it either.

Yeah.

[Julianna Scott] (15:32 - 15:33)
I have no love for any of them.

[Kelley Jensen] (15:33 - 15:33)
No.

[Julianna Scott] (15:34 - 15:59)
And we go into a deep dive on that in our paper. And there's lots of information for people who want to hear about the statistics of research funding. And lack thereof.

And lack thereof. We have a lot of information on there. But bottom line, it's just really not profitable for people to research autism.

So that's another big thing. There's lots of factors, and they are quite interesting, but we won't go into them here. They are in the paper.

[Kelley Jensen] (16:00 - 16:21)
But where do you start then, right? Where do you try in the Trientific method? Where do you do it?

First thing you do is you organize the financial burden, right? Because, again, a lot of this stuff is not covered by insurance, strictly because it's not researched as thoroughly as the FDA would require, as the insurance carrier would lean on the FDA to require.

[Julianna Scott] (16:21 - 16:25)
Did you have anything covered by insurance? What treatments were covered by insurance for you?

[Kelley Jensen] (16:26 - 16:53)
Well, speech. And then eventually that got cut because he wasn't making progress fast enough. Can you believe that?

Not that he wasn't making progress, but it was just too slow. That, OT was covered. Back then, we were just starting to get some ABA coverage, and we did eventually get ABA coverage.

And we never got that. We got it eventually. It took a while, but we got that.

We had a little speech, a little OT.

[Julianna Scott] (16:54 - 17:18)
That was pretty much it. The medications were covered. Yes, but my psychiatrist wasn't.

Oh, yes. Of course not. So we had very little coverage.

And how did you afford that? It's a financial burden. It became a priority.

That was sort of our family's priority for us. It was like, okay, that's where our money was going. Yes.

[Kelley Jensen] (17:18 - 17:42)
So the first thing I would say about organizing the financial burden is if your child is recently diagnosed, you have a young child, there are much more insurance options now. And there is a social media phenomenon that I do not understand where you deny treatments as not being good enough that are covered by your insurance. Never take anything that's not...

[Julianna Scott] (17:42 - 18:05)
And always try it. And always try. Even though we privately paid for speech therapy, that was in addition to what we were getting covered through early interventions programs and the regional center and things like that.

We always tried what we could get. And we would either supplement that or use that. But we would never just turn away.

[Kelley Jensen] (18:05 - 18:59)
Do not do anything that's going to isolate you more. So make sure that you are using your insurance coverage to the fullest extent your child is entitled to. There's something also that we didn't have access to until our children were much older, the ABLE accounts.

Achieving a Better Life Experience is the name of it. It is basically a savings account for anything that would cover the costs associated with a disability. It's only for people that have been diagnosed prior to, I believe it's age 18.

So one of the first things you need to do on diagnosis is establish an ABLE account. It's just basically a tax-free savings account. But what I really like about it is you don't need very much money to start it.

And people want to do things. People are compelled, your parents, your brothers, sisters, cousins, people who know you well, what can I do? They can donate to your ABLE account.

[Julianna Scott] (18:59 - 19:00)
It'll grow tax-free.

[Kelley Jensen] (19:00 - 19:16)
Yeah, and your kid doesn't need a huge present for Christmas every year. They need a donation to their ABLE account every year. It adds up faster than you think.

And you're going to be in the game for a long time. You're going to want to try different things as they age. And you'll be surprised how glad you are to have that.

[Julianna Scott] (19:16 - 19:27)
Oh, absolutely. That's an amazing benefit. So next thing we would suggest is to learn to evaluate treatment options critically.

We say this all the time.

[Kelley Jensen] (19:27 - 19:28)
All the time.

[Julianna Scott] (19:28 - 19:28)
We are broken records.

[Kelley Jensen] (19:29 - 19:29)
Yes.

[Julianna Scott] (19:29 - 19:44)
But yeah, you need to explore each option individually, understand how it might interact with your child. But we also have some other guidelines beyond do your research, which we always say. The first one, there is no cure for autism.

[Kelley Jensen] (19:44 - 20:11)
Don't look for a cure. There is no cure for autism. Do not look for a cure.

Any treatments that talk about recovery, cure, healing, dismiss those. Don't put those at the very bottom of the list. There is no cure for autism.

I can't stress that enough. Yeah, and that's okay. People live with disabilities all of the time.

Your child is part of a strong group of people.

[Julianna Scott] (20:11 - 20:30)
A little bit of an aside here, that whole notion of curing autism, I hope we're getting past that. And that's what I don't like about a lot of the conversations that RFK is having and things like that, making it scarier to have autism than measles or something like that. It's like, autism isn't something we need to cure.

[Kelley Jensen] (20:31 - 20:33)
It's something we need to improve the function.

[Julianna Scott] (20:34 - 20:34)
You improve the functionality.

[Kelley Jensen] (20:35 - 20:53)
You improve if you can't speak, you work towards learning to speak, right? If you're having debilitating meltdowns, you work towards organizing your emotions so that you don't have these horrible meltdowns. But it's not something that, we talk about autistic joy a lot, that the core of your being is not something that you can or should cure.

[Julianna Scott] (20:53 - 21:03)
No, no. I would not want to cure my son's autism at this point. Would I like him to be able to function better?

Yes, always, always.

[Kelley Jensen] (21:04 - 21:58)
And I wanna make a plug here for all autistic people everywhere. Learning doesn't stop. They're progressing at their own rate.

It might not be the rate of regular childhood development, but they are still making progress every day, even into adulthood. And as long as they're moving forward, you should count your blessings, right? Yes.

The other thing we get to is recognize that no matter how effective a treatment may be, there's always gonna be people it doesn't work for. And it's one of the reasons why autism research is not widely available and people shy away from it. The keeper of the keys, as I like to call them, they shy away from it because such a wide swath of symptoms and behaviors, the response is automatically low.

So whatever you try, if you've tried it because you heard it help someone else and it doesn't help your child as much as you had hoped.

[Julianna Scott] (21:59 - 22:01)
Well, we're a good sample.

[Kelley Jensen] (22:01 - 22:01)
100%.

[Julianna Scott] (22:01 - 22:14)
I mean, our sons haven't followed the exact same treatment. No, nor should they. So yeah, something that works for my son might not work for yours and vice versa.

[Kelley Jensen] (22:14 - 22:41)
So include all core morbidities. And this is why I talk about being reassessed and it's autism plus. That is one trend in autism diagnosis that has stuck that I think is very important because it broadens the accessibility of everything that is available.

So if your child has autism plus ADHD, then they are eligible for the common ADHD treatments and interventions.

[Julianna Scott] (22:41 - 23:03)
Yeah, all of the acronyms, OCD, PTSD, all of them. It's really important because something that might work for your child's OCD might also help improve symptoms overall. And again, we're always focused on anything that can alleviate symptoms to enable them to learn is a win.

[Kelley Jensen] (23:03 - 23:32)
Autism travel, a lot of people, again, the trientific method, you're living in a part of the world where, and I say world because this is not only something that affects us in America and there's even less availability of treatments in other countries. So people literally come from all over the world for the slightest bit of improvement and functioning. And autism travel is a real thing.

But where you're going, make sure that there's some regulatory environment that you can count on, right?

[Julianna Scott] (23:32 - 23:53)
Yes, especially if you start getting into things that are more in the experimental stages. People are coming into the U.S. for treatments, but people are leaving the U.S. for treatments that they can't find here, that are maybe less regulated. And so you really do wanna be careful about what you're doing and who you're going to.

[Kelley Jensen] (23:53 - 24:08)
And just common sense medical advice hold. So if you're going somewhere, traveling out of the country to try something that you believe in, make sure you're doing it with a reputable person, company. Yes, absolutely.

[Julianna Scott] (24:08 - 24:09)
Safety is always first.

[Kelley Jensen] (24:09 - 24:45)
Right, this is important thing to me because it happens a lot where you go to try, speak with a consultant and they are working with you and giving you a list of things to do and they barely see your child. And I think you should put the interventions first where they are working directly with the autistic person. I think that's important.

I think that it's a sign of how well they know autistic people, if they're working with them every day. If you go and you're getting a list of supplements... I remember one time I took my son...

Back in the day, it was all gluten-free, casein-free.

[Julianna Scott] (24:46 - 24:52)
I remember all those reports that people would do about all these levels and vitamin deficiencies.

[Kelley Jensen] (24:52 - 25:49)
So we went to this alternative practitioner in order to decrease, I don't know, some level that we had been told was really, really high. And, you know, I brought him, because, I mean, he's the patient, not me. And she said, oh, you know, she was quite nervous around him and he was being pretty stimmy.

I mean, I thought he was actually being well-behaved and she said he's being very, you know, does he normally stim like that? Well, he has a lot of echolalia, he's autistic. That's what they do.

And she said, oh, well, you don't have to bring him in the future, I can just interview you. I got up and left. No, I got up and left.

I picked him up. I said, thank you, we won't be coming back. And I just left.

And it stuck with me. She taught me a lot, which is that if you can't be around my son, you can't help him. So that is something that is important to me.

I think it should be important to all parents. If they don't work with your child, put them on the bottom of the list.

[Julianna Scott] (25:49 - 26:03)
Absolutely, because they're not observing. And that's another big red flag. Back to the early diagnosis.

It's like if they're not observing progress, how are they going to give you really good advice?

[Kelley Jensen] (26:04 - 26:13)
One of the reasons I never went back to the fancy lady is because she wasn't working with him. So the alternative medicine lady, if she wasn't working with him, goodbye to you too.

[Julianna Scott] (26:14 - 26:48)
Very simple. So Kelley, let's jump in to some real examples of treatments that show some promise and that are evidence-based, and some other ones that are standard and evidence-based. So standard treatments, speech and language therapy, we've already talked about that, OT.

Medication, of course. Medication and ABA. So those are sort of the standard ones that you get a list of, if you get a list.

Yes. So let's now move into some treatments that show promise. Yes.

[Kelley Jensen] (26:50 - 29:50)
So when my son was about 22 years old, he had developed a much more acute case of obsessive compulsiveness disorder, you could say. You know, he was always very rigid. And I always thought that he had OCD.

And I was always told it was the rigidity of autism. The psychiatrist had given him medication for it. But it would tick up and down as his life, the demands of his life would change.

And 22 was a pivotal age. He was done with school. I had sent him to a residential school and he had come home, too homesick to be there.

So I was desperate to help him because he was developing this hoarding tendency that was, you know, he couldn't leave the house without his stuff. He was so nervous all the time and it was leading to meltdowns if he didn't have his stuff, he needed his stuff. And I just said, one night at midnight when I'm Googling, forget autism.

What is he entitled to if he has OCD? He's on the medication for it. He says, oh, I know he's entitled to the medication.

It's not doing much, but he's on medication for it. So he's entitled to that. What else?

There's got to be something else that people with OCD do. And I found out that there's a form of brain stimulation, transcranial magnetic stimulation, TMS, that is on label and prescribable for OCD. And I said, well, he has to have that.

If he's entitled, I mean, he could make the most severe OCD person humbled with his rigidity right now, right? I want to try this. But then my husband said, do they work with people who are autistic?

And so then I started Googling TMS for autism and I found a version of transcranial magnetic stimulation called MART, magnetic e-resonance therapy. And I said, this is it. There's one practitioner in our area I want to try it from.

It's drug-free. It's non-invasive. He's, in my opinion, entitled to this because it's the version of TMS. I want it for him. And my husband was skeptical, but he said, of course, you should try it, right? And it worked wonders for him. And what did you see?

Well, it's a five days a week for six weeks. And immediately, I'd say probably about week four, well, I started seeing little things right away. But about week four, my husband who had been skeptical was seeing undeniable things.

And it was all of the things about not having to have his stuff with him, about specifically not being so anxious that he had to have his stuff. And he could go to the grocery store and buy one thing and not try to load the entire cart. And that was about week four.

The most special thing was he always had to ride elevators. A lot of people who have autism are... Big fans of elevators.

[Julianna Scott] (29:50 - 29:50)
Yes.

[Kelley Jensen] (29:50 - 30:08)
And there was one elevator in particular in an airport that we used to visit where he would have to ride it all day, every day. It seemed like we needed an extra half an hour for this one elevator, pressing all the buttons. And one day we were in the airport and he walked past it and went down the escalator and got in the car.

[Julianna Scott] (30:08 - 30:08)
That's major.

[Kelley Jensen] (30:08 - 30:44)
And I ran into the bathroom and started crying. And my husband was a bit of emotional as well. And then he finished treatment.

And one of the things they say about brain stimulation, and we get into this in the paper, there's a lot of different protocols, methods of stimulating the brain. One of the things they say about it is the biggest gains are after treatment. Right.

And that's sort of because the brain is being prepped. It's taxing on the brain to be taking in all these magnetic pulses. But then afterwards, the circadian rhythms are reset, brainwave patterns are reset.

And then a lot of learning really takes place. I noticed a difference with Beau.

[Julianna Scott] (30:44 - 30:50)
Yeah. So Beau is... I am on his call list.

Yes. I get calls from Beau at least once a day.

[Kelley Jensen] (30:50 - 30:51)
Yeah.

[Julianna Scott] (30:51 - 31:01)
Love it. And he's very understanding if I can't pick up. Yeah.

But I remember around that time... Sometimes Beau has... He can be a little rote in his questions.

[Kelley Jensen] (31:01 - 31:01)
Yes.

[Julianna Scott] (31:01 - 31:20)
Script. There's... Yeah.

He wants to know where people are, things like that. But I remember at that time, I was able to... I always kind of test, push back and try to get him out of the loop.

Yeah. And he was really much easier to get out of the loop. Yeah.

And we had more conversation.

[Kelley Jensen] (31:21 - 31:28)
Yeah. And so my husband went to go get the mail and the neighbor said, hey, Eric, are you doing something different with Beau?

[Julianna Scott] (31:28 - 31:28)
Yeah.

[Kelley Jensen] (31:28 - 33:28)
And Eric said, why do you ask? Because there was a little apprehensive to say we're putting a magnet on his head. And he said, well, I had a conversation with him the other day.

He said, hey, Roger, how you doing? And my husband... That was his moment to cry.

Certainly not a cure. Certainly not in any way, shape or form is my son not autistic anymore. He's certainly textbook.

Still asking you about lawnmowers. Still loves lawnmowers. But I think the thing that we noticed the most was that it decreased his rigidity and his anxiety to the point where...

I mean, just the other day he said to me, I'm not going to bring my computer. Mommy's too heavy. So that's one less bag.

I just can take one bag. And I had been happy that we had been down to three bags that were getting in the car and he's down to one bag now. Because that's a very logical thing, right?

The other day he said, I said, oh, why don't you put your sandals on? He said, no, mommy, they're slippery. And that was like, oh, well, that's quite a descriptive word.

And so it keeps coming, right? And what I have decided is that it's because he's not as anxious. And so when he's not as anxious, he's not as rigid.

But the bottom line that I want every parent to know is that if your child has a comorbidity that would entitle them to transcranial magnetic stimulation or whatever you decide, whatever is covered by your insurance, it is covered by insurance for major depressive disorder and OCD from, well, major depressive disorder, ages 15 and up. It is currently being studied for ages 12 and up. It is covered for OCD ages 18 and up.

But if your child has a comorbidity that entitles them to brain stimulation, you do not let that doctor off the hook and you get it. They're going to give him a pill. They can have a pill.

He can have a noninvasive form of brain stimulation. So that's my take on that one. Yes, absolutely.

So EMDR, tell me about that.

[Julianna Scott] (33:28 - 36:17)
Yeah, so EMDR, now I feel like people have heard about it a little bit. But back when I first heard about it, it was news to me. But EMDR stands for eye movement desensitization and reprocessing.

And my son, it was recommended for my son because he also has OCD and generalized anxiety and depression. And he was what they called a boil frog. His anxiety was always so high that he wasn't really able to address his OCD with some typical ERP and some other typical OCD therapies.

So it was suggested we try EMDR. And fortunately, again, we do live in an area, we're very fortunate. The woman who did EMDR with my son, she was trained by Francine Shapiro, who created this. But basically with prompts, she would wave her hand to kind of have his eyes track her hand movements.

And it's a way to reprocess trauma and decrease anxiety. And so at the end of it, it's fascinating because I got to watch it. And I've actually done it.

And it's pretty profound to watch because what you're essentially doing is putting trauma that kind of bubbles up and you are reliving it all the time. So a lot of veterans or rape victims, they've used it for that. You put them in the past.

It's like shuffling things that feel very present into the past, into memories. So it's doing, it's kind of mimicking what you do when you're dreaming. And that's why, you know, you have the rapid eye movement and it's like, it's kind of mimicking that.

And it really does, it doesn't erase your memory. It doesn't do anything like that. It just like when you remember those things that used to cause you like physical anxiety, it's just, you just remember it and you don't feel it.

So when you're able to relax a little bit and then you're able to move forward and do that learning, doing the other hard work that comes along with it. So it's not an indefinite therapy. It's, I think it's typically like eight sessions and my son wanted to keep going.

Maybe that was, the OCD isn't cured. But because it did, you know, stimulate something and it really did affect him. So again, all of these things are not for everyone.

Right. My younger son did it. He kind of wasn't ready for it.

I think he talked about that in the siblings episode that EMDR was something he did and it didn't help for him. But, you know, again, it's something investigate, see if it's something you might want to try. Try and tiffic.

[Kelley Jensen] (36:18 - 36:31)
So we're going to get into our to-do lists, but before we do, I do want to, I'm always wanting to make a suggestion for profoundly severely autistic people, because nobody...

[Julianna Scott] (36:31 - 36:31)
They're often out of the conversation.

[Kelley Jensen] (36:32 - 37:07)
They have been left out of the conversation too much. Transcranial magnetic stimulation, MERT, they are non-invasive versions of electroconvulsive therapy, ECT. And it is not well-known enough that ECT is an option for self-injurious behavior for severely autistic people, people that are banging their head against the wall, severe aggressive behavior.

ECT is an option for those behaviors. There's information about it in the paper. In my opinion, psychiatrists should be telling the parents of severe children about that.

[Julianna Scott] (37:08 - 37:43)
But Kelley, tell me about ECT. I did do some reading and it looks like, because I have the idea, it has a stigma, right? It has a long history.

You think one flew over the cuckoo's nest. Even, I was just watching the recent episodes of Wednesday and Uncle Fester gets shocked. And I'm just like, okay, is that ECT?

Right. No, I mean... No, it is not.

That is the old, way old school ECT. It uses a very low voltage. It's under anesthesia.

[Kelley Jensen] (37:43 - 37:55)
It's under general anesthesia. For just a few minutes. For just a few minutes.

It induces seizures. That sounds more scary than it is, but the point of it is to calm the brain down.

[Julianna Scott] (37:55 - 38:02)
And it works. I know that it's often prescribed for treatment-resistant depression too.

[Kelley Jensen] (38:02 - 38:11)
It is the gold standard of treatment-resistant depression that responds to nothing else. Again, we have more information about the paper. Do your own research.

[Julianna Scott] (38:11 - 38:19)
Do your own research. But we have several links about research on that one. Yes.

Because I know it can be hard to find.

[Kelley Jensen] (38:19 - 38:32)
Practitioners that do it, which is one of the reasons why I think it's not talked about is because there's not enough practitioners. But if you have a child that is giving them themselves a concussion on the daily because they are banging their head against the wall, someone should be telling you about it.

[Julianna Scott] (38:32 - 38:49)
And also, it's one of those things that we've talked about, I think, with medication. It's just, is what you're dealing with now worse than any potential side effects? Is it enough to make you maybe try something that you've done?

[Kelley Jensen] (38:49 - 38:50)
Sounds more scary.

[Julianna Scott] (38:50 - 39:05)
Sounds more scary. I'm not saying go do something scary or something that you don't really truly are behind. But is what you're dealing with now acceptable for anybody?

And just as scary. Right. So it may be even scarier.

[Kelley Jensen] (39:05 - 39:09)
Okay, so on to the to-do list, right, Julianna?

[Julianna Scott] (39:09 - 39:16)
Yes, but hold on. Before we get there, I do want to shout out a few things you shouldn't try. Okay.

Let's just do a couple.

[Kelley Jensen] (39:17 - 39:17)
Oh, please.

[Julianna Scott] (39:17 - 39:31)
Yeah, we've heard them all. But top on the list, I don't know if people are doing it. Actually, I did see something on social media the other day.

They just don't do the rapid prompting method. Oh, yeah, no. Hyperbaric oxygen therapy.

No.

[Kelley Jensen] (39:31 - 39:33)
I have seen that. What? No.

[Julianna Scott] (39:33 - 39:35)
No, no. Chelation therapy. No.

[Kelley Jensen] (39:35 - 39:35)
No.

[Julianna Scott] (39:36 - 39:47)
The restrictive diets. No. Hormone treatments.

No. Unregulated supplements. No.

So this is just a sampling. There are many.

[Kelley Jensen] (39:48 - 39:48)
Yes.

[Julianna Scott] (39:48 - 39:50)
Again, you can go to the paper. Yes.

[Kelley Jensen] (39:50 - 39:57)
Yeah, and follow common sense about what involves your child, right?

[Julianna Scott] (39:57 - 40:09)
Yes, yes. So now we're going to talk about what would we do in some scenarios. Okay, good.

So what would we do if we had to choose between multiple options and decide what's worth it?

[Kelley Jensen] (40:09 - 40:43)
The first thing that you do is organize your finances. Never do anything that's going to make you go broke. There is no cure for autism.

It is not worth it to go broke. So exhaust all paid-for treatments first. Start saving.

Ask family members that can contribute to contribute and then take it from there, right? And ruthlessly prioritize. Ruthlessly prioritize behavior by behavior.

The most egregious and ill-functioning behavior.

[Julianna Scott] (40:43 - 40:48)
Yep, yep. Here's another one. We can both talk to this one.

[Kelley Jensen] (40:48 - 40:48)
Okay.

[Julianna Scott] (40:48 - 41:12)
So if friends, family, parents in the waiting room insist that a treatment they've tried will work for our kids, what do you do? And I remember talking to you about this a lot. Because the waiting room, people, I'm just like, oh, these newbies want to tell me about dolphin therapy.

And I'm like, I'm about at least five years ahead of you, researched it, eliminated it, not interested.

[Kelley Jensen] (41:13 - 41:21)
Or they tell you about how great the service dog is, right? You're supposed to spend the money on a service dog.

[Julianna Scott] (41:21 - 41:22)
I have a dog, yeah. It's great.

[Kelley Jensen] (41:23 - 41:38)
It depends. Sometimes you need a service dog. Well, to that point, service dogs should be a very expensive, well-trained dog.

And mostly for the kids who have seizures, they do some amazing things there. If not, a good family dog, a good family breed, they get it.

[Julianna Scott] (41:38 - 41:39)
They get it.

[Kelley Jensen] (41:39 - 41:39)
Yeah.

[Julianna Scott] (41:42 - 41:55)
Sometimes there's someone in a waiting room that might give you a good suggestion. But again, follow that up. Look for verifiable sources.

Maybe you get a good idea, but don't take their word for it.

[Kelley Jensen] (41:55 - 42:09)
So I always say you let skepticism walk alongside an open mind. Hear what they have to say. I put a timer on it.

Okay, I'll look into that. Five minutes. And then I do always make a note of it, though.

We love information. I know.

[Julianna Scott] (42:10 - 42:29)
Another research project. We've often said, oh, my God, I heard about this ointment that they're rubbing on their kid. Let's check it out.

My gut reaction is always like, that can't be. But then I'm always pulled in like, well, let me just double check. Because, you know, we're all curious.

We want to know what works. So again, that's part of the trientific method.

[Kelley Jensen] (42:30 - 42:39)
Yes, but not to follow them blindly. But don't shut them out, either. Because everybody's doing something different because everything works for a different person.

[Julianna Scott] (42:39 - 42:40)
Right?

[Kelley Jensen] (42:40 - 42:43)
That's the problem with autism. There's so many options.

[Julianna Scott] (42:43 - 42:56)
You can give them a piece of advice or set the table for five minutes and then be on your way. Right? Okay, so list of to-dos.

Okay. What should you do right away?

[Kelley Jensen] (42:57 - 43:04)
I've said this over and over and I'll say it again. Get your finances in order. Figure out what's covered by your insurance.

Start there.

[Julianna Scott] (43:04 - 43:11)
Yep. Prioritize. Do your research.

Get referrals from family and friends. And always set realistic expectations. Always.

[Kelley Jensen] (43:12 - 43:53)
And then reset those expectations when you see how your child is progressing. Yes. So once you've done that, short term, what do you do?

Um, yeah, I hate to come back to the woman that said treat it like a second job. But I mean, it is a second job. Stay organized about it.

You got to get a system for what you want to try, when you're going to try it. I mean, get that calendar out. Never forget that they're kids.

So, you know, the calendar should be dictated by having some fun and by trips to Lowe's to check out lawnmowers. Right? Because autistic joy, the more joy you show them, the more you don't feel like your childhood, their childhood is just spent in a waiting room.

You don't want that either.

[Julianna Scott] (43:53 - 44:00)
So don't start a whole like five treatments at once. Don't say, okay, it's summer. Now I'm going to do five treatments.

[Kelley Jensen] (44:00 - 44:00)
Yes.

[Julianna Scott] (44:00 - 44:03)
First of all, it's hard to tell what's working when you do multiple therapies.

[Kelley Jensen] (44:03 - 44:04)
One at a time.

[Julianna Scott] (44:04 - 44:08)
One at a time. But also it's just, you know, that's overwhelming for anybody.

[Kelley Jensen] (44:08 - 44:08)
Yes.

[Julianna Scott] (44:08 - 44:15)
So prioritize, figure out the timing, you know, decide what you're going to do and how you're going to track it.

[Kelley Jensen] (44:15 - 44:45)
And you have to keep your family in mind, right? If you're going to do autism travel over the summer, because you've heard about something that's not available in your area, really plan it. And what are the sibling is going to do?

Is there a camp that they can go to while your autistic child is doing therapy? Can dad fly in on the weekends or drive on the weekends? You have to kind of consider your entire family and what their role is and base everything on the limitations of your family.

Yeah.

[Julianna Scott] (44:45 - 45:06)
And also remember that you are part of a team. Like, again, we were told upfront, like, this is your job. You're the team captain or whatever you, CEO, whatever you are.

But, you know, it is a team. So rely on therapists, get feedback. How's it going?

Should I quit? Yes. I mean, should I restart?

All of those things.

[Kelley Jensen] (45:06 - 45:25)
People that are with your kid a lot are great, especially that's one of the reasons why we like ABA. They're taking copious notes all the time. So they really are...

The only people who took more notes than I did. Yeah. But those notes are very useful and are yours.

So that's good. Yeah. And then, of course, people that know your child but aren't around them every day are invaluable.

[Julianna Scott] (45:25 - 45:26)
That's also helpful, like your neighbor. Yeah.

[Kelley Jensen] (45:26 - 45:30)
Because they see things because they're not around them every day. So they know it's different.

[Julianna Scott] (45:30 - 45:38)
So long term, I know we want, we always say this too, keep evaluating whether or not something's working and reassess your child.

[Kelley Jensen] (45:39 - 45:53)
Yes. As they age, you have to commit to having them reassessed. Again, they're not going to not be autistic.

You're not going to get a new assessment that says, oh, they're not autistic anymore. But you are going to say, I see symptoms of OCD presenting.

[Julianna Scott] (45:53 - 46:07)
Different symptoms. Some are presenting themselves a little more obviously, maybe some aren't. So yes, assessments are good.

And there's always, there seem to be some reasonable times for assessments too, like milestones and things like that.

[Kelley Jensen] (46:07 - 46:22)
Again, consider along those lines, consider any comorbidity. What treatments are available for that comorbidity? My example, if he is entitled to this treatment for OCD, I want him to have it.

Don't let them tell you no. Yeah.

[Julianna Scott] (46:22 - 46:58)
If he can have it, he should have it. Another point I want to make too, especially because we have adult children with autism is it doesn't end when they're under 18. And even if my son doesn't live with me, I'm still researching things.

I'm still telling him like, hey, this might be available to you later. Or here's a new drug. Can you mention it to your psychiatrist?

Or, hey, what's working? We're still talking about new things. Things are happening all the time.

So the research doesn't end just because it's maybe not a 24-7 job. And neither does the progress.

[Kelley Jensen] (46:58 - 47:14)
Progress doesn't end either. It might be slow. It might be like watching grass grow.

But yes, they will progress in their way as best as they can. Yes. Things that are blocked.

Again, there is no cure for autism. Trust no one that tells you there is.

[Julianna Scott] (47:15 - 47:15)
No.

[Kelley Jensen] (47:15 - 47:15)
There you go.

[Julianna Scott] (47:16 - 49:16)
Again, safety first. No physical danger. Yes, yes.

Don't try anything you can't afford. We stress that. We can't stress that enough.

Yes. And last on that don't list is don't freak your kid out. Because they still pick up on our vibes.

And if we're worrying about something, that can transfer to them. So put that worry somewhere else. Call a friend.

Absolutely. And Julianna, can you tell me why this conversation matters? I can.

It's because everybody's trying stuff off-label. There really is no alternative. If you are parenting a child with autism, you are trying off-label treatments.

Every single one of us is doing it. So that's why this is important. Thank you for watching.

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.

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