Refrigerator Moms

Julianna Scott 00:00
When it comes to autism and teens, nobody wants to talk about sexuality, puberty, hygiene. But we're doing it anyway.
Julianna Scott 00:13
Welcome back to the Refrigerator Moms. I'm Julianna. I'm here with my friend Kelley. Hello. And today we're going to do something a little scary.
Kelley Jensen 00:21
Just flat out no fun. I know, I know. Cringy. I know. I would go so far as to say, I can't say we're excited to talk about this.
Julianna Scott 00:25
We weren't excited to write about it either. No. But it's a really important conversation and I don't think people are having it enough. And I wanna say that I'm doing this paper and having this conversation with you were one of the few people I had to talk to about these cringy.
Kelley Jensen 00:44
It was really the worst. But we talked about it together. We did. I really feel strongly that other people, other moms have that resource because we didn't have it. We were.
Julianna Scott 00:53
Thank God we had each other. No, I definitely did not have that resource. Other than you. Yes. So you're welcome.
Kelley Jensen 01:00
Yes, totally. And before we dive in, we really want to get to some of the questions that we are posing and then answering. But a little bit before we get into that, we do want to talk. We don't want to go into a ton of background about like the clinical background of what's happening.
Julianna Scott 01:19
Yes. Everyone knows what's happening. But of course we're gonna link our paper in the show notes. Go to refrigeratormoms.com we do have a whole paper about this. This is our second in our third planned episodes on teens. The first one we did was about education.
Kelley Jensen 01:39
Education. We did that one. Now we're doing puberty. The next up will be transition to adulthood. But all cringy.
Julianna Scott 01:47
It's all a little cringy. No fun to write. No. No fun to live. No fun to live through on either this equation.
Kelley Jensen 01:54
Absolutely. So again, it's not a one size. Fits all, but absolutely not. It is the definition of person centered plan puberty.
Julianna Scott 02:05
Totally. Totally. So quick background. So we're not going to belabor this, but we do want to acknowledge that autistic teens show higher rates of gender dysphoria and inappropriate sexual behavior, but also reduce sexual awareness compared to peers and higher rates of identifying outside heterosexual and binary norms. So yes, they get infantilized a lot. Hyper fixation on Pokemon doesn't mean that the 14 year old isn't gonna go, it's Pokemon.
Kelley Jensen 02:37
It's Pokemon. It's not Pokeman. I just have to say it's Pokemon. I apologize. I apologize.
Julianna Scott 02:45
I need to control the things I can when I'm talking about puberty. But your 14 year old is still gonna be curious about sex in between. Pokemon. Pokemon Cards.
Kelley Jensen 02:59
Yes, yes. So the lack of sex ed is directly tied to the higher victimization risk and the more inappropriate sexual behavior. So the fix for both is the same, real, explicit and tailored conversations. Yes. And this is not just about ethics. It's about safety.
Julianna Scott 03:17
There are real safety concerns and we're gonna. I mean, okay, I know. I kind of dread getting into all this, but we did. Again, backing this way up. Once you're approaching this teen, this goes for your neurotypical one too.
Kelley Jensen 03:33
Hopefully you're laying the foundation before they hit teens where communication is open. And I know for our autistic child, he really was very open with us. So we got a lot of is it normal questions when we started hitting this age, which was a little rough, but preferable.
Julianna Scott 03:56
Yes. And I did not have that luxury.
Kelley Jensen 03:56
Yeah, yeah. But we worked through it anyway. And it's again, something that you start early, start as early as possible, get ahead of it.
Julianna Scott 04:09
Right, right. So when. So my son played ice hockey and literally the locker room talk afterwards, I would get like, you know, hey, they were talking about this, and it was very educational, but you really want to be able to correct some of the things that are being talked about. And when they do have questions that they will come to you and ask you. So let's dive in. Okay, first question. What is the role of parents, doctors and teachers and therapists when it comes to this phase?
Kelley Jensen 04:45
Well, a lot of times it's a team sport. Right. Because particularly if you're. You had a great open dialogue with your child, he was willing to ask you questions, able to ask you questions. But there for a lot of autistic people whose body's changing, but maybe their minds are slow to catch up, they don't know what's going on in their body, they don't know what to do about it.
Julianna Scott 05:06
And they're relying on the therapists that have gotten them this far, the doctors to help navigate the body, the hormonal change. This isn't time to skip the annual physicals.
Kelley Jensen 05:35
Absolutely not. And it's not time not to talk to the doctors about what your child is going through. Sometimes people disconnect, you know, hormonal changes, what's going on in the classroom with a visit to the doctor for a physical.
Julianna Scott 05:35
But they're part of it. Right. And this I always thought was kind of confounding is there's that period of time where you're not privy to the information automatically anymore. So you might take your child to the doctor and you're not in the room anymore and you are cut off access to their electronic records. You can, I mean, our son gave us access because I just had the passwords and stuff.
Kelley Jensen 06:07
But you do need to have that trust with your child and you need to have that relationship with the doctor to share some information. If it's, you know, something that, or you can tell the doctor, hey, you know, can you make sure that this gets into the conversation?
Julianna Scott 06:39
Absolutely. That's just, it's just a very crazy time. And it was, to be honest, just as hard with my daughter who, because, you know, I had to tell her I thought it was a good idea if I was in on the doctor's visits about these conversations.
Kelley Jensen 06:39
And you know, luckily with my daughter, she, she agreed. But yeah, it's a very weird thing to, to have a 15 year old person, girl, you know, boy or girl, and be like, I think mom should still be able to hear your conversations with the doctor. And I know it's very strange.
Julianna Scott 07:05
Yes, it is strange. But this notion of the, of having trusting relationships also kind of goes into how much should a child share and with whom.
Kelley Jensen 07:05
And this is something that I know my son worked on the Circles of Intimacy really early on in, in social skills groups and in ABA therapy. And I think in ABA therapy that was one of the first things early on.
Julianna Scott 07:23
So a very important lesson, the circles of intimacy.
Kelley Jensen 07:25
And again, kudos to ABA. So we heard so many criticism of ABA that it's not warranted. And this is a perfect example because they did the Circles of Intimacy as a way to quickly teach any child. My child really needed that visual of, oh, this is who's in the inside circle, and this is who I share what my body looks like. This is who touches me, this is who sees me.
Julianna Scott 07:50
And as that circle goes wider and wider, people that know me less are not entitled to certain things.
Kelley Jensen 08:06
Yeah. And there are things you can go online, you can get a circle, but honestly you can just draw a circle. Or you can ask the ABA therapist. Ask the ABA therapist to do it.
Julianna Scott 08:06
To do a program to show. Yes, absolutely. To talk about, you know, and those in the center, it's a small group, those are the people who you can go to for any concerns about your body or people who are allowed to see your body. These are all really important conversations to have when your child is, you know, before puberty. We had that circles of intimacy lockdown before puberty.
Kelley Jensen 08:29
So then it's just a different. You shift the conversation a little bit to issues of consent, added people. You know, you add different categories of people to your circles. But that circles of intimacy is really important.
Julianna Scott 08:45
It is a very important visual. If you have a child that is nowhere near puberty age now, but you're listening to this, kudos to you for getting ahead of it and staying ahead of it. But think about at least introducing the concept of a visual for who you share what with.
Kelley Jensen 09:24
This episode of the 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 aged 3 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.
Julianna Scott 09:26
Okay, and also, let's talk about non speaking kids. So it's really important in this time of puberty that they have their privacy.
Kelley Jensen 09:26
Yes, all kids should have some privacy during this time. And yes, we're talking about masturbation.
Julianna Scott 09:44
Listen, it's a healthy thing for your non verbal child to do. Does your nonverbal child know where to do it? Privacy. So we get this question a lot from parents that want to know. He's kind of masturbating in the living room.
Kelley Jensen 10:03
What do we do? Don't make a big deal about it. Don't introduce shame.
Julianna Scott 10:13
No, simply redirect him to his room and say privacy. Right, that's it.
Kelley Jensen 10:14
Or bathroom. Or the bathroom. If you can redirect him to the bathroom and specifically the shower. Win, win.
Julianna Scott 10:22
Yeah, win, win. And they get the hang of it pretty quickly. Privacy, it's a simple word. There's no judgment in it. There's no reaction to it. Redirection into a private space in this.
Kelley Jensen 10:34
Case, especially when there are some inappropriate, like when kids are doing things in public spaces. It's going to be abundantly clear that your autistic kid has the same urges that your neurotypical kid has. But those that aren't doing that, they still have those same urges. And I think that's the infantilization. And we see that sometimes in fictional accounts and things like that.
Julianna Scott 11:00
Like even we saw in the pit when we talked about the pit and Becca, her sister comes in with a UTI and from having a lot of sex and her sister was, Dr. Mel was like, didn't know anything about this. It's like, these are, you know, people have the same physical urges, so physiology.
Kelley Jensen 11:00
Yeah. So we can't shy away from those conversations. It's much more important to get ahead of those.
Julianna Scott 11:31
So. And if your child is in public and doing that in public, it happens again, part of the cringe of this conversation. But.
Kelley Jensen 11:40
Ask some of the therapists to help you work with on a plan for communicating when and where. You know, it might be that you're leaving the house a little bit later because you're giving them more time in their room to do that in their room before you leave the house. Right. If it's happening outside the home, a quick redirect with something to put in their hands. And then when they get home, you're going to work with the therapist that this is private time.
Julianna Scott 12:06
Right, right. It's not fun. No. But it's also. They don't know either.
Kelley Jensen 12:11
They don't know there's something happening in their body. They don't know. And so whatever skills you have to communicate, use them, but no shame.
Julianna Scott 12:19
Okay, so the next thing we wanted to talk about was autonomy and privacy versus safety. And we talked about this when we were talking about. It was on a social media episode, and we were talking about talking about hygiene. And there's the whole my body, my choice. And this notion of, I mean, well, number one, safety is always first. So autonomy in this sense is kind of earned and expanded as far as it can go without compromising safety.
Kelley Jensen 12:50
Absolutely. So there's like, what you were just talking about. And then also we're talking about the other thing about puberty. There's a lot of smells. So many smells. So many.
Julianna Scott 13:00
And so we need to really talk about hygiene. Can't avoid that, too. Again, the. The shower, a win.
Kelley Jensen 13:09
Win. It's just a win all the way around. And so that my body, my choice, obviously you're gonna have conversations about who can see my body, who can touch my body. But also if there are concerns about hygiene, we need to talk about. No. Like you need to take a shower, or if your child has a diaper and they need the diaper changed, or.
Julianna Scott 13:35
If they're getting their period and they're needing their period pants changed.
Kelley Jensen 13:35
Right. You know, ready or not, these are conversations that matter. And it's part that you can see now why it's important that the entire team, the teachers, the doctors, the, you know, therapists, aides, everybody is giving the same message. Privacy, time to change.
Julianna Scott 13:58
Right. You know? Right. The. The notion of smelling.
Kelley Jensen 14:01
Maybe you can't smell yourself. All of these things become a conversation and language that the team shares. And okay, we have boys, but girls who are going through this periods. It's a big topic. And also there's lots of sensory issues going through puberty and all of these different things.
Julianna Scott 14:22
So we have a couple really good resources that tackle these issues, and we'll put them in the show notes and they'll be in our paper on our website at refrigeratormoms.com and in the paper. But it's really important. Important because especially if you're dealing with children who lack some communication skills and knowing what your options are around your period. Pants versus a pad versus a tampon. Gotta have these conversations.
Kelley Jensen 14:53
Yes. Check out the paper explaining as much you can. Like what's happening with their bodies. Not a time to give up ABA.
Julianna Scott 15:04
No, it's really not. It's not a good. Not a time. Have a clear program in place.
Kelley Jensen 15:16
Yes. So we talk about how do comorbidities shift during puberty? This is a big one. Be on the lookout. If you haven't had them reassessed in a while, you're noticing mood swing. Mood swings are probably the first thing.
Julianna Scott 15:26
And. Oh, teenagers are moody.
Kelley Jensen 15:26
Yes, they are. But autism is ripe for comorbidity. Comorbidities that set in in adolescence. It's something that you should have a basic understanding of what you're looking at.
Julianna Scott 15:40
Just assessments, reassessments is the time to do all that. There's the physiological changes, but there's also the social changes. And again, going back to. It's just a perfect storm of events happening right now. So it could be something that.
Kelley Jensen 15:56
Like OCD or an eating disorder. Depression, depression, anxiety. And all of these things are. They're in high school or late middle school, and there's all those pressures. So it's already a pressure cooker anyway.
Julianna Scott 16:12
And then you add the physiological changes, the sensitivities, the sensory issues, maybe a lack of communication. It's all very confusing. So make sure it's time for reassessments. It's time to go again. Go back to your medical team or.
Kelley Jensen 16:30
Get a second opinion.
Julianna Scott 16:30
Absolutely. Anytime that the doctors are suggesting medication, ask for a full reassessment. Ask for an addition to the diagnosis that becomes important later when you're looking at all kinds of treatment options.
Kelley Jensen 16:46
Yes. And we also have a paper on comorbidities. We'll put that in the show notes. Go back to that one. Go back to a tough pill to swallow about medication. Keep going, keep going.
Julianna Scott 16:59
Yeah. And here's a great one. Birth control.
Kelley Jensen 17:05
Ooh, so fun. I know, I know. So let's talk a little bit about birth control. And we're both like, oh, great. Do we have to. So after we talk about these questions, we move into the what would we dos? And one of them is going to.
Julianna Scott 17:21
Let's just talk about this. It's like if we feel like our children need to have either a permanent birth control or what happens when consent capacity is limited.
Kelley Jensen 17:37
Yes. So this is because. Oh, well, first, before we dive into that.
Julianna Scott 17:37
I'll give you a minute break before we get into that one. But obviously consent is really important for all teens to understand.
Kelley Jensen 17:37
Absolutely. It is really important that, that, that communication that you're communicating with your child who either is needing to get consent or give consent. It is really important to have that whole conversation about what is okay and what your partner, what you need from your partner.
Julianna Scott 18:11
So have it early, have it often. Those conversations.
Kelley Jensen 18:16
Yes. They take a lot of practice. They take.
Julianna Scott 18:16
Thank God for the circle of intimacy.
Kelley Jensen 18:16
Yes. No kidding. No kidding. And you know.
Julianna Scott 18:21
Yeah. I mean people can move into that circle of intimacy and then out of that circle of intimacy and that's it. Every day that's a conversation.
Kelley Jensen 18:30
Okay. All right. Yes. Okay. So let's talk about, let's talk about. What do you think if your child does not have the ability to consent to. So this comes up a lot in populations of severely autistic people.
Julianna Scott 18:46
The notion of permanent birth control. Girls will have very violent reactions to their period.
Kelley Jensen 18:56
Boys too, you know, are sexually active sometimes even if they're non verbal. They all genders of severely disabled people are oftentimes taken advantage of and you know, they are sexually assaulted. It is a terrible fact of life. So first go back to vetting your caregivers. If you have anyone you know, again, you need to look at who your child is around and make sure that they're safe.
Julianna Scott 19:25
Always, always safety first.
Kelley Jensen 19:25
Yes, but. Okay, now back on track. But as a precaution, as they maybe are gaining some independence or because in the case of girls, if their periods are particularly troublesome and violent, parents want to have the option for permanent birth control. And we go into this in great detail, the paper.
Julianna Scott 19:47
I'm not going to belabor too many of the points here. If this is an issue that affects your family, there is a great section in the paper all about the whys of permanent birth control. And it's not a decision to be taken lightly.
Kelley Jensen 20:12
It's not a decision that can be taken lightly, but it begins with a care team and it begins if you're a parent, you're listening to this on the onset of puberty.
Julianna Scott 20:12
So sex education, education about hygiene and how the bodily functions work is something that you try every year until your child reaches adulthood. And then at that point, it might be necessary for the team to get consensus on what per. What form of birth control would be appropriate for your child. But that's after years of attempts at communicating birth control options to your child. It's a painful process.
Kelley Jensen 20:40
It's a long process, but it is. And it's one that there's not a lot of guidance on. It has a very dark history in the United States.
Julianna Scott 20:50
Yes. But we put that information in there. There's a great paper that serves as a guide that we really like that we put in the paper as a resource. So check it out if you're weighing this issue with your child.
Kelley Jensen 21:01
Yep. Okay. Pivoting from that.
Julianna Scott 21:01
Now, this makes hygiene seem easy. That makes hygiene seem easy. So again, back to that. It is not a personal autonomy issue if your child is refusing to shower or brush their teeth or any of those things. Like, this is the period of time where you really need their buy in.
Kelley Jensen 21:19
But you need to be consistent and say there are real consequences. For example, not brushing your teeth, your teeth are going to rot. You could have infections. There's all kinds of things. And there's the social consequences.
Julianna Scott 21:36
You know, when you go to school and you smell there are real consequences. And then those persist, they go. And then you're in the workplace and all those things you need to. This is training ground.
Kelley Jensen 21:47
Yes. So we just had a great experience. Where we interviewed Temple Grandin. We did. Look for that episode come out soon. She was big on choices and she was very clear that two choices in time to process. Which is fabulous, timeless advice.
Julianna Scott 22:02
And I think it applies to the issue of hygiene. For my son. He's not great about brushing his teeth. I can get him to brush his teeth, but he absolutely draws a line at flossing. But he acquiesced to more trips to the dental hygienist.
Kelley Jensen 22:19
So that is a compromise. That is a two choices. Floss your teeth every day or go to the dentist more often. You hate to shower, bath or, you know, every other day.
Julianna Scott 22:31
Right. Pick your wins. Make the choices palatable and find out, is it a sensory issue? Do you need a different towel? Do you need a different water pressure?
Kelley Jensen 22:40
I mean, problem solve it a little bit if it's. If there is a sensory issue, a component, two choices, time to process. Temple Grandin, obviously great advice and of course, the circle of intimacy. You can always whip that out if you.
Julianna Scott 22:54
Why does it matter for I smell? Well, you might, you know.
Kelley Jensen 23:04
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Julianna Scott 23:24
To dos. All right. Immediately. What should. What should we do in this situation? Puberty has hit.
Kelley Jensen 23:31
Conversations.
Julianna Scott 23:31
Yep. If your child is non verbal, how are you? How can you have conversations? Hopefully you have a good team of behavioral therapists.
Kelley Jensen 23:38
These are concepts that the changing body. These are concepts that you introduce with whatever means of communication are available to your child as early as possible. And speaking of communication, you shouldn't use euphemisms. You should use the correct name for body parts. Why do people do that?
Julianna Scott 23:54
I don't know. I don't know. Why do people do that? I mean, it's just so confusing when it's just. It's a simple word. Just say it.
Kelley Jensen 24:00
Right. Can you say it?
Julianna Scott 24:00
No, I don't have to.
Kelley Jensen 24:09
Can you point to it on a chart? Is it under your bathing suit? That one? A bear with a bathing bikini on it?
Julianna Scott 24:20
Yes. No. But in all fairness, if I were, I would say the word penis if I were having a conversation with my son. I have no regrets about it.
Kelley Jensen 24:20
No. Although I have to admit in our household, my boys said lagina for a long time and I didn't really correct them. But I figure that one is going to translate pretty well.
Julianna Scott 24:38
I don't think anyone's going to be too confused if they use the word lagina. And you know, and you do need to, at some point, they need to understand. I remember once my son was saying something about he was having a big meltdown and he said he was gonna punch me in the penis. And I had to explain that. I'm like, which battle am I gonna pick here?
Kelley Jensen 24:59
Am I gonna explain that I have a lagina or am I gonna. Actually. Might have been great distraction.
Julianna Scott 25:09
That's true. A teachable moment on so many levels. I mean, you whip out the doll, maybe the meltdown goes away, right?
Kelley Jensen 25:09
No, but getting back to impossible to embarrass muscle. Right? And that goes both ways. If your child is doing something inappropriate in public, it's because they don't know.
Julianna Scott 25:27
And find a way to communicate to them where they can do it without shaming them for doing it.
Kelley Jensen 25:40
Right. That's a theme that runs through. But it's part of the impossible to embarrass muscle. Right?
Julianna Scott 25:40
Yes, it's very important. Okay. In the short term, get sex ed adapted to your child's functional level, written into the IEP. Very important.
Kelley Jensen 25:52
Yes. And becomes important later. We were talking about permanent birth control. These are. How well does your. Under your child understand their sexuality?
Julianna Scott 25:58
How well does your child understand how their body functions? IEP can be great evidence for consensus on. On some of these things later. So. Okay.
Kelley Jensen 26:07
Yes. And then. So you use the zones of regulation. Zones of regulation go right up there with the circle of intimacy as a great tool to. It's a shorthand for feelings.
Julianna Scott 26:17
And it becomes very important in adolescent as feelings become a lot less concrete and much more abstract. And there was many a day where I just was so glad I had that word red or blue. Blue became actually a. Blue is sad.
Kelley Jensen 26:33
Okay. So things that made him blue became very important because, you know, he was blue a lot more in as a teen and I needed that information.
Julianna Scott 26:33
Yep. So reiterating in this, in this time period, loop the pediatrician in on all these conversations about mental health capacity, reproductive health. So this is on an ongoing conversation. Set real time boundaries and openly discuss pornography.
Kelley Jensen 27:01
Oh, the screen time. Yes, yes, yes. So, yeah, I know we didn't want to talk about porn, but here we are. The victimization of autistic people in pornography is very real.
Julianna Scott 27:14
Yep. We'll leave it there. But it's. Go to the paper. It is part of an active discussion.
Kelley Jensen 27:21
That part. Part of discussing sex with your child.
Julianna Scott 27:21
Yeah. Because I mean, well, okay, yes, you should definitely go read the paper. But it. Porn is problematic in these years because there are the unrealistic body expectations.
Kelley Jensen 27:36
There's. They think that this. I mean, if they think that porn is an instruction manual, that's not great. And it's not. No, no.
Julianna Scott 27:44
Is it? No, it's really not. Okay. What should you not do? Don't panic if your child is behind their path, hasn't been straight and it's not going to be straight in their sexuality as well.
Kelley Jensen 27:57
So just don't panic. Develop that. I'm not embarrassed. Muscle. And it takes practice.
Julianna Scott 28:04
Like building muscle always takes practice. But don't panic. Okay, the other one, don't infantilize.
Kelley Jensen 28:21
Yeah, they can still like Barney, Pokemon, whatever it is, and still be ready to explore their body and start thinking about sex. Don't be sex shy.
Julianna Scott 28:22
Yeah, masking, it's all. The pressure of masking is already high.
Kelley Jensen 28:31
Yep. Try to have the attitude that this is part of life. It is part of the human experience.
Julianna Scott 28:39
That is true. So don't be shy about it. Have the conversations. Oh God, did we make it through this one? I think we did.
Kelley Jensen 28:39
Oh, thank God. Okay, so if you.
Julianna Scott 28:39
I can't say if you liked what you heard here, subscribe, but if you found this helpful, like, subscribe, go to our website, tell people about this episode. Recommend this episode so people can find us. Particularly if you know someone that is struggling with the issue of permanent birth control.
Kelley Jensen 29:03
It's become taboo and it's so an honest conversation. And on its guideline of what to do is so needed. So go to the paper, send that to someone that you know that might be struggling.
Julianna Scott 29:19
Yeah. And go to our other papers and episodes about this. We talked about the teen episode on education, then we talked about college readiness that dovetails into that comorbidities, medication, masking. This time period is really rife with all of these things. So find those episodes and those papers and look ahead to our last of this three part series, all about the transition to adulthood, including dating, housing, independent living skills, careers, you know, job placement, all of that stuff. So that's to come. Yay.
Kelley Jensen 29:50
Thanks. Thanks for listening.
Julianna Scott 29:50
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