Refrigerator Moms

Kelley Jensen [0:00:00] Hi, I'm Kelley Jensen. I'm here with my friend Julianna Scott. We are the Refrigerator Moms. Today we are talking about autism diagnosis — autism and all the things that you might get with an autism diagnosis. So this is right before you and I met. My son was three, or actually was a little bit younger than three, but we just knew something was up.
Julianna Scott [0:00:30] How did you know? You would hear...
Kelley Jensen [0:00:31] A phrase, then you never hear it again? The kind of classic, you know, start and stop of speech, the toe walking. It was pretty textbook back then. We did not have the Internet. You could not do some searching, but you just knew something was wrong. So we started the journey towards diagnosis, and we were in that crew, that generation of people that when you went to the pediatrician, he's probably fine.
Julianna Scott [0:00:53] Yeah. Oh, and is that what you heard?
Kelley Jensen [0:00:54] Definitely. That was what we heard. But I was not convinced. And so our journey began, and it was a good thing it did because it started us on a whole new journey. And as he aged, it was obvious that the diagnosis was appropriate. It was obvious that we needed to maybe add some other conditions to that diagnosis. I know you had your son diagnosed very young as well.
Julianna Scott [0:01:18] Yeah, yeah, yeah. And before I tell you that story, like, what was your reaction to the diagnosis?
Kelley Jensen [0:01:23] Well, I have told my diagnosis — it's a long story — that there was... I mean, it was all of those emotions. I was angry because I knew something was wrong. She didn't really tell me anything. I didn't know. She just repeated the symptoms back to me in a very thorough...
Julianna Scott [0:01:36] And did it feel validating?
Kelley Jensen [0:01:41] No, because I really wanted ideas for how to help them, and they never came. And so that was the overwhelming kind of, you know, you kind of jump into fix it mode with your kid, and it's a very shallow pool of trying to fix it. And then there's a bit of a relief, though. I see. I told you. I told you that I knew something was wrong. And I don't know in this day and age if that relief — that at least you have a name for the behavior — is as maybe acute as it was for us, because pediatricians screen a lot more regularly for it now, at the second year checkup. Right. So we didn't have any of that.
Julianna Scott [0:02:16] Right.
Kelley Jensen [0:02:17] I'd like to emphasize that that was as young as... My son is 26, so that was 24 years ago. They did not screen. And no, a very fine pediatrician. Yeah, it's probably fine.
Julianna Scott [0:02:30] Yeah.
Kelley Jensen [0:02:30] That was the advice that we got. So I really always want people to have that context in the back of their head when they're looking at data that's showing all these crazy increases, because your first line of defense is always your pediatrician. And they were probably telling you he was fine 20-something years ago, right?
Julianna Scott [0:02:49] Yeah. Well, mine didn't tell me he was fine. But I mean, my story's a little bit different. So my son was a preemie — two months premature. So at the get-go, I knew he wasn't going to hit developmental milestones. So when, for two years or at least a year when he wasn't hitting developmental milestones, it was meaningless because I was expecting it. But when he was getting closer to two and not talking, and his behavior — he was having massive meltdowns for long periods of time — and he was at his like two-year checkup. And I mentioned this to his pediatrician, and she kind of red-flagged it. And she's like, well, you might want to talk to somebody. And she first sent me... I first went to an MFT, which was kind of odd, but she was the only person who I could kind of get. And then she was the first person to suggest autism because she observed him and his ritualistic play. And then we went to a psychiatrist who then sent us to another psychiatrist who specialized in autism. So we bounced around a little bit, but really rapidly. So he turned two. And in fact, for his second birthday, we were videotaping him, and we used that video. I think one of — we had had an appointment with a doctor and they said, do you have any... you know, if you can videotape him, that would be great. And we videotaped him at his birthday, and like while everyone's running around, he's just putting crayons in a cup, dumping them out. Putting crayons in a cup, dumping them out, like the whole time. Yeah, you know, the candles come out on the cake — not looking. Yeah, yeah. All that stuff. In the video, my husband and I are like looking at each other like, oh, you know, this isn't good. This is evidence here.
Kelley Jensen [0:04:40] Right.
Julianna Scott [0:04:40] But it was a bit of a long story situation for us too. And we got into fix it mode too.
Kelley Jensen [0:04:47] So fix it mode is what happens. And that's okay. It is part of the journey that you're on, and, you know, you mellow out with it over time.
Julianna Scott [0:04:57] It was a little confusing. I just want to mention, in our case, he did get the diagnosis of PDD-NOS, which doesn't exist anymore.
Kelley Jensen [0:05:05] Right.
Julianna Scott [0:05:05] And that was a little confusing because it's like, well, is he autistic or is he kind of in this weird gray area of autism? And that started some confusing years about...
Kelley Jensen [0:05:17] The diagnosis, which I did not have, because it was clear we had deficits in all three categories. And the language thing was the biggest red flag. He didn't have those meltdowns. His behavior started when he was older. And parallel — he'd really exhausted parallel play. Parallel play was his version of masking. Right. So he could run around with the best of them and you could miss it. You know, he slept well, he ate well, he hit every developmental milestone except for the talking. And that was sort of his ticket to the world of autism.
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Julianna Scott [0:06:35] The diagnostic process for autism goes through the three steps of monitoring, which could be parents — like we were the first one saying, hmm, I think there's something going on. Yes. Then the next thing is screening. That could be... we talk to a pediatrician, and then there's all these assessment, like screening tools.
Kelley Jensen [0:06:56] Yes.
Julianna Scott [0:06:57] And there's many of them. And as we normally do when we dive deep into a topic, we have a paper on our website at Refrigerator Moms and it outlines all this information in depth, including — this one has bonus appendixes — because there is so much information about diagnosis. And so the first appendix is all about the different screening tools that might be used, will probably be used.
Kelley Jensen [0:07:21] And we are going to make a special plea in this episode. It's great to use the screening tools. It's great to go into social media groups and do some investigation, but do not stop at your own self-diagnosis. No, no.
Julianna Scott [0:07:36] These are just to see what screening tools might be used by a professional. These are not tools for you to use.
Kelley Jensen [0:07:44] Self-diagnosis is a real thing. Do not use a parent coach. If you're going to go through a diagnosis, go through the full diagnostic process.
Julianna Scott [0:07:55] Right. I mean, even your pediatrician — I mean, you might, your pediatrician might be able to make a diagnosis depending on if it's a pediatrician who's able to do that. But most likely your pediatrician isn't going to do those screening tools. You're going to go somewhere else for that — a developmental pediatrician or a psychiatrist. And then that's where you go for your formal diagnosis. And that's where you do not want to go to anyone except for a professional who's been trained. Go to the professionals. Don't do it yourself. It's a great starting point. And I think, especially as an adult, if you haven't had a diagnosis — it's a late diagnosis situation — I think it's really tempting to just do the screening or do a questionnaire.
Kelley Jensen [0:08:38] Yeah.
Julianna Scott [0:08:39] But first of all, like, that might — I think that's helpful in saying, okay, yeah, I need to take some next steps. But especially if you're a parent of a child and you want to kind of unlock some of those services and interventions, you want to get that formal diagnosis. You want to start there.
Kelley Jensen [0:09:00] So we've got people that seek a diagnosis for their child, usually before the age of five. Right. Maybe the overwhelming reason they seek a diagnosis is severe meltdowns, lack of sleep, or not developing language. Probably those top three.
Julianna Scott [0:09:15] Before we even got the autism diagnosis, I knew he wasn't talking, so I was like, okay, we need to get on that. Let's go to a language pathologist and get going.
Kelley Jensen [0:09:25] But what about someone who's older? What about a teen or even a young adult? Even an older adult? What would be the point of getting a diagnosis at that age?
Julianna Scott [0:09:33] First of all, I think if you're a teen or an adult and you're taking those online quizzes, obviously you want to know — like, why am I feeling this way? Or why do I feel like I'm doing things a little differently? A lot of it is, I think, increasing self-awareness and self-actualization.
Kelley Jensen [0:09:51] You want more for yourself. You don't feel connected. Something doesn't feel right.
Julianna Scott [0:09:55] Yeah.
Kelley Jensen [0:09:55] A lot of times people are seeking more in their relationships or their work, and just self-actualization and understanding of yourself.
Julianna Scott [0:10:03] And that's — a lot of people who are late diagnosed feel a sense of relief. It's like, okay, I know what's happening. Yeah. So I think it's a great...
Kelley Jensen [0:10:12] We encourage people if they think they're on the spectrum and that they went undiagnosed — and they maybe went undiagnosed because it was in an area of the world where they had my experience, where the pediatrician thought they were fine and told their parents they were fine, maybe their language was fine.
Julianna Scott [0:10:28] Right.
Kelley Jensen [0:10:28] So it got missed. That doesn't mean that it would not have been an appropriate diagnosis with a different set of eyes. And so they have gone through their childhood and they've felt something wasn't right, or they wanted to understand themselves better.
Julianna Scott [0:10:42] So back to the formal diagnosis — in terms of, you know, where you are on the spectrum too. Like, that's another thing that we talk about in our paper. We also have things about, you know, the levels that we talk about.
Kelley Jensen [0:10:55] We no longer say PDD-NOS or...
Julianna Scott [0:10:59] High functioning, or anything else. There's levels 1, 2, and 3. We outline what those are on there, and also the severity levels. We also talk about that. So that's all on our website and in the paper.
Kelley Jensen [0:11:12] So there is a difference — a lot of people might not be aware of this — between a medical diagnosis of autism and an educational diagnosis of autism. And they're very distinct, different. A lot of people are not aware that a medical diagnosis of autism may or may not qualify you for educational services.
Julianna Scott [0:11:29] That is correct. And that can surprise some people. So an ASD diagnosis does not necessarily entitle a student to services under IDEA — the Individuals with Disabilities Education Act. So you need to show that there is some level of support that's needed within the school setting. So eligibility for special ed services is decided by a team, and that could be school professionals and the student's parents. So the team needs to find that the student qualifies for services under IDEA, and they have to have at least one of 14 specified disabilities to be in need of special services. So an autism diagnosis doesn't necessarily mean you're entitled to speech therapy. Depending on how your level of your speech — or what the delay is — right, you might not get OT, you might not get all these things. So it really depends. So understanding the differences between the medical diagnosis and the educational determination for eligibility is really important. So you can advocate better. You can't just go in and say, well, my child's autistic, I need speech therapy.
Kelley Jensen [0:12:42] So I guess our recommendation — I mean, if you have a level three medical diagnosis, you're probably going to qualify for services. The best advice I would have would be to have full transparency with the school district as soon as you get the diagnosis, and give them the diagnosis, you know, from your physician. That would be my first recommendation. And then let them go through the process of doing their own evidence and...
Julianna Scott [0:13:05] They're going to do their own evaluations anyway — even with your diagnosis, or, you know, a whole slew of privately paid-for diagnoses. They're going to do their own assessments. It might even be the same assessments, but they're going to do them again.
Kelley Jensen [0:13:21] Or they're going to take yours and fold it into theirs. It just depends on the school district. It depends on... This is another reason why a diagnosis from a very pedigreed professional makes a big difference. Right?
Julianna Scott [0:13:32] It can. It can. But also remember that sometimes your diagnosis, or your evaluations, you know, might be done earlier. And they — your child hasn't yet been in the school setting. Right. So they — the school setting, they're looking for academic and functional skills.
Kelley Jensen [0:13:47] Right.
Julianna Scott [0:13:48] So those might not even be included in your original diagnosis. So the educational services require more than just the diagnosis.
Kelley Jensen [0:13:59] Most times — when my son was diagnosed, the person that diagnosed him suggested... I suggested... They didn't even fully say, go call the school district, which should have been the minimum. She should have told me. But I digress. Of course, I knew to do that. And so I called the school district, and he was eligible for early intervention services through our school district, which was really quite a relief because, again, you know, you jump into fix it mode, but then you also feel kind of lonely. I hadn't met you yet. I hadn't got my sea legs, you know.
Julianna Scott [0:14:31] No, you're definitely in this most intense part of the process where you don't know the world yet, and all the players. You have to become an expert really quickly. And I think that was also the hardest part — I wasn't confident yet in my advocacy for my child. And I think that during that period, that was one of the hardest things. I didn't know how to argue for what he needed because I wasn't sure exactly what he needed yet, because I wasn't as fully educated about autism and potential deficits. So — I mean, I wouldn't advocate what we did necessarily — but literally, after our son was diagnosed, it was at UCSF Medical Center in San Francisco, and the doctor that had diagnosed our son had written several books on autism. We just walked across the street and got a couple of her books at the bookstore and just started reading about it. Like, you know, I'm not saying you have to do that, but start educating yourself once you get that diagnosis to figure out what it is, and then you can kind of start developing your vocabulary around it. But I felt like that was a really hard part in those early days — like, what do I do with this diagnosis? Yeah.
Kelley Jensen [0:15:47] So a lot of — we didn't have this because it wasn't, you know, the rush of diagnosis that it is today that people describe today. So we didn't really have any waiting lists. But there might have been a waiting list to get a diagnosis. But we didn't have any waiting lists for services. You know, you could call the speech therapist and you could get right into the speech therapist. That's a little different now. These folks are dealing with, you know, a two-year wait list — in some parts of the country — for ABA. So that's why my advice is to reach out to the school district, reach out to everybody that's covered under your insurance plan. But start with your school district to see if you can get something going.
Julianna Scott [0:16:21] Find out what you're entitled to. I know — before we even got to the school district level, we were at the, you know, insurance level, the Early Start level. And we got in right away with Early Start for California. That's another window. And then you do those services, and then that's a really educational period if you're able to get a diagnosis that early, because then you're kind of prepped for when you move into the school district. We had our formal diagnosis, but then we started collecting all these other evaluations — like the Early Start one, and then the school district one, and then the speech therapist one. Get your binders.
Kelley Jensen [0:16:59] Yeah, yeah.
Julianna Scott [0:17:01] I wonder...
Kelley Jensen [0:17:02] Just treat it like it's a second job.
Julianna Scott [0:17:04] Are people using binders anymore?
Kelley Jensen [0:17:07] They probably have a file in there. Yeah, just treat it like it's a second job. I'll never forget that as long as I live.
Julianna Scott [0:17:13] Well, mine told me to basically treat it as my job.
Kelley Jensen [0:17:16] Yeah, yeah.
Julianna Scott [0:17:17] It wasn't — I didn't even have a second job. That was my primary job. That was the job. We also want to talk about comorbidities, and this we talk a lot about — because of course we do. Because the stats are: 70% of individuals with ASD have at least one comorbid psychiatric disorder. 40% have two or more. So a comorbid disorder is obviously having another one adjacent to it. The problem with this is — not only because often the symptoms overlap. So that is a challenge.
Kelley Jensen [0:17:58] Well, you know, if you're getting an early diagnosis with a child that's three, you know, the practitioner might rightfully decide — let's wait before we add an attention deficit disorder. Let's wait before we add an anxiety disorder. Let's wait before we add depression. And, you know, all of the things that might come next. And as the child ages, and as they do get intervention, as they do get education, these symptoms that started as an overlap of autism might become more prominent — might even take over as the primary. When you have autism, you are always taking it one behavior at a time. Right. So the comorbid diagnoses have a tendency to come later, as behaviors set in. Right. As needs set in.
Julianna Scott [0:18:43] Like what we did was — we were all about treating the symptoms, not just following the diagnosis. And I think that is helpful at early ages, because it doesn't matter. He has anxiety — like, whether we call it generalized anxiety disorder, which we will later, it doesn't really matter. We just need to deal with the anxiety. The same thing — my son has OCD. Well, it's really hard sometimes when they're really young to pull out the OCD. And then also I remember talking to my doctor — this psychiatrist — about it. It's like, well, how do I even tell the difference? And she's like, well, OCD rumination is unpleasant. That's very anxiety-producing. An autistic perseveration is stimming. That's self-soothing. So I said, okay, that's helpful. So we know that this is OCD over here, because you treat them differently. You treat OCD rumination differently than you would autistic perseveration, or stimming. So it is good to tease those out, but it can be very tricky — especially if you have a child who's not able to communicate that.
Kelley Jensen [0:19:59] Yes.
Julianna Scott [0:19:59] So communication, as always, is the big challenge with a lot of these. Getting these comorbid diagnoses and observation.
Kelley Jensen [0:20:09] And you know, it's an important step in the process — every couple of years — to go and revisit some of these original diagnoses and see if they need to be refined.
Julianna Scott [0:20:18] And also you've got to keep in mind different milestones. You're not going to be able to diagnose ADHD necessarily, or dyslexia or something, until they're in an educational environment where that really shows up. So at different stages you're going to get different feedback about what the deficits are, and maybe you get another diagnosis — add it to the list.
Kelley Jensen [0:20:43] Maybe services, or interventions that might be appropriate for that diagnosis.
Julianna Scott [0:20:48] So who would you go to for these diagnoses?
Kelley Jensen [0:20:51] I think you should stick — if you can — you should stick with the original assessor, as they get to know your child. Although I have this whole thing about how it's the people that are really in the trenches with your child — the speech language pathologist, the occupational therapists, the behaviorists — that are in there every single day, taking copious notes, that are working with your family. I have an affinity for them, of course. And I so value their opinion on... Gee, that looks a little bit more like OCD. You know, this is — this is graduating. This is — we're not making any headway with this one, so maybe let's go revisit the... And I have found that with the assessor, they really value the input of the therapists that are working with your kid every day, and they take it in under advisory.
Julianna Scott [0:21:36] That goes back to the very first step, right? Monitoring.
Kelley Jensen [0:21:39] Yeah.
Julianna Scott [0:21:39] You know, so we're always monitoring.
Kelley Jensen [0:21:42] And you get excellent help monitoring from these folks that start working with your child.
Julianna Scott [0:21:47] Totally. So how does having a comorbid diagnosis affect next steps? You've got your multiple diagnoses. You've got folded in with ASD. What do you do?
Kelley Jensen [0:22:01] You still take it one behavior at a time. Look at the landscape. I mean, my example is perfect. With my child — forget about autism. What is he entitled to? His diagnosis of OCD — what is... you know, oh, transcranial magnetic stimulation. I want that. We haven't had that yet. I want that. Let's try that. So the real benefit of comorbid diagnoses is interventions you might not have known about without another diagnosis. Right.
Julianna Scott [0:22:28] I think you also need to think about it in conjunction with each other. Because I know, like, for my son — with his OCD — like, one diagnosis would exacerbate the other. Especially — okay, number one is anxiety, right? Yes. So anxiety would just fuel that fire of OCD, and depression — you know, anxiety, depression — it's all fueling it. And so you need to kind of get a grip on anxiety in order for OCD treatments to work — like ERP or anything like that. You need to address one to benefit the other, and kind of figure out, okay, first we need to do this in order to get that. And then also you've got to consider what's conflicting. So it's complicated. And I think that also talking to professionals who deal in all of the things, you know, is helpful. Like, whenever I'm looking now — for even though my son is an adult — I'm still the one who does most of the research to find a new psychiatrist, a new psychologist, or anything. And I'm always looking for professionals who deal with all of the things, because somebody who just focuses on OCD but doesn't really know autism — that's not going to work. They really need to know both.
Kelley Jensen [0:23:46] Yes, I agree.
Julianna Scott [0:23:47] So keep looking for those professionals. And I guess the pro of all of these diagnoses kind of becoming more prevalent is more people are specializing in multiple diagnoses.
Kelley Jensen [0:24:02] Yeah.
Julianna Scott [0:24:02] So, yeah, it's complicated. And again, you need to do your research on all of the things.
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.
Kelley Jensen [0:24:38] Okay, so we are going to jump to our... What would we do? The part of the paper where we talk about what we would do in any given situation. There's more of them in the paper, but we're going to pick the two that we think are the most representative.
Julianna Scott [0:24:49] Yep.
Kelley Jensen [0:24:50] If we are not sure when and if we should disclose our child's diagnosis. This is...
Julianna Scott [0:24:55] Disclosure is a big one.
Kelley Jensen [0:24:56] It's a good one.
Julianna Scott [0:24:57] Yeah, yeah, yeah. So there's multiple ways — obviously — you can disclose. There's the disclosure to family, to schools, and then there's also when you disclose to your own child, if that is the scenario you're in. There's lots of reasons people choose not to. They fear judgment — that's the biggest one. If their family might be judgmental about it, or give unsolicited advice, and that just opens up a can of worms. Or you don't want friends to know because you're afraid of what they might think. Or you don't want the school to know because you don't want them to say, well, we can't have him here because we can't — if it's a private school — we can't support him. Something like that. And then maybe you think your child can't handle hearing that they have autism. So there's lots of reasons that people give for not disclosing. I, you know, my personal belief is — why not? My son was pretty much raised with therapy.
Kelley Jensen [0:26:03] Right.
Julianna Scott [0:26:04] There was no hiding that this was... I mean, I think I've told you the story. Once he was in — it was before preschool or before kindergarten — and someone from the school district was observing him and stuff like that. And he turned to me and he's like, well, why doesn't he have a clipboard?
Kelley Jensen [0:26:24] Fair question.
Julianna Scott [0:26:25] I mean, if somebody is looking at me, they should be writing. They should be taking notes.
Kelley Jensen [0:26:29] I'm doing all the things.
Julianna Scott [0:26:30] I'm doing all the things. So, yeah, there was no hiding it. And he — but when it seemed appropriate to introduce that kind of language, I did kind of tell him formally, I guess. And he was just like, okay. I mean, did not care at all. But I know other people who have disclosed to their kids, and they feel a sense of relief — like, oh, okay, now I get it. Now I know why I'm doing what I'm doing. Yeah.
Kelley Jensen [0:26:57] I mean, you kind of have to. Begs the question — if you can hide it, is it really autism? I mean, you know that, like, there would be no hiding it in our family. I mean, you couldn't miss it if you tried. So why would you hide it? Because it's just life. It is our life.
Julianna Scott [0:27:15] Right. But I think for most — I think having that vocabulary and understanding — it makes more sense to people. And then, of course, you know, disclosing as an adult with autism is obviously purely their choice. My son chooses not to disclose a lot of times because he thinks that, you know, he just doesn't want people to put, you know, stuff on him — or make assumptions about what he can and cannot do. That's the short of it.
Kelley Jensen [0:27:52] Fair.
Julianna Scott [0:27:52] Yeah.
Kelley Jensen [0:27:53] So there is no right answer.
Julianna Scott [0:27:54] There's no right answer.
Kelley Jensen [0:27:55] Whatever works for your child and your family.
Julianna Scott [0:27:56] Right? Exactly. So I want to ask — what would we do if we are told, when we say, oh, I think there might be something going on, I'm going to go in for a diagnosis — and people tell you, oh, you know, all kids do that.
Kelley Jensen [0:28:12] Or he's fine.
Julianna Scott [0:28:13] Yeah. Or like, oh, your uncle did that. Totally normal.
Kelley Jensen [0:28:18] Everybody's got the weird uncle. Right. Or the grandfather that didn't speak until he was 150. Right.
Julianna Scott [0:28:23] Or something crazy. All this advice. Oh, don't worry about it.
Kelley Jensen [0:28:28] What I would say is — nobody gets more unsolicited advice than the parents of a toddler they're worried about. Right. And everybody means well — they're trying to make you feel better. But ultimately, particularly if you're talking — if it's a generational thing — and in a generation ago where, you know, they are of the opinion it never existed — they're not the best people to be a sounding board for what your child's developmental milestones are. So I would ignore everybody and go with your instincts and go with the guidance of a professional.
Julianna Scott [0:29:00] That's good advice. That's what I would do.
Kelley Jensen [0:29:04] Sometimes you've got to just be tougher. Right.
Julianna Scott [0:29:07] Okay, so our to-do list. We love lists. So — immediately — what would you do?
Kelley Jensen [0:29:14] Well, first of all, we are going to say that we are putting in the immediate, short term, long term, always: what you need to do is speed to acceptance. Right. Speeding to acceptance is something that...
Julianna Scott [0:29:27] And we're going to put it in all of the categories, because it's something that you continually have to do.
Kelley Jensen [0:29:33] And then the other thing we're going to put in all the categories is learning to manage anxiety.
Julianna Scott [0:29:37] Yep.
Kelley Jensen [0:29:37] Anxiety is not going anywhere. And everybody gets anxious. Everybody in the family, everybody managing autism — siblings, everybody. You know.
Julianna Scott [0:29:48] We know that the siblings are very anxious.
Kelley Jensen [0:29:50] Get it.
Julianna Scott [0:29:51] The parents are anxious. We know our autistic child is anxious. Everybody needs help for that.
Kelley Jensen [0:29:57] So anxiety — in the immediate, short term, long term, until the day it's over — you are managing anxiety and speeding to acceptance. And it's never over.
Julianna Scott [0:30:06] So, yeah.
Kelley Jensen [0:30:07] Right. In the immediate — what I would say is, when you first get that diagnosis, it's a very emotional time. Allow space for the emotion. Everybody jumps into fix it mode, and there's nothing... It's part of the journey — you're going to be the one that fixes it. You know, that's part of what we all go through. But try to save some space for processing grief, for understanding what it is that brought the diagnosis itself. And I don't want to say don't jump into fix it mode — but try not to jump into fix-it mode. Jump into understanding mode.
Julianna Scott [0:30:43] And again, like we say — fix it mode. Obviously you're not going to fix autism. Right? We know this. Yes.
Kelley Jensen [0:30:48] But there is that whole...
Julianna Scott [0:30:50] Going to get intervention mode. Yeah.
Kelley Jensen [0:30:53] I don't know. You're going to get a whole lot of stuff from Susie's friend whose child had chelation and they are speaking fine.
Julianna Scott [0:31:03] You're going to want to grab onto all of those things, like as early as you can. Understand that this is your child — they're an individual. And you're going to start looking carefully and thoughtfully at what is right for that person and your family.
Kelley Jensen [0:31:23] That's right. All right. What would you do in the immediate?
Julianna Scott [0:31:26] Not as touchy-feely as that one. When you get all of the questionnaires — and I'm going to tell you this right now — if you're in the beginning of this, you're going to forever be filling out developmental questionnaires.
Kelley Jensen [0:31:38] It never ends.
Julianna Scott [0:31:39] It never ends. Like, have all that information in a spot. Like, start your binder. And it should include developmental milestones. You're going to be filling out all this stuff. But then — when you know what does your child like to do — all those things. Have more than one person fill it out. Like, often it falls on the primary caretaker to fill out the developmental questionnaires. But it is helpful to get your spouse, your partner, somebody else involved. Getting different perspectives — when they're older, to get, you know, perspectives of teachers or...
Kelley Jensen [0:32:10] Yeah, that's a really, really important one. You know, for Beau, I didn't ever realize what a shorthand him and I had for communication until Eric starts filling out the questionnaires. Because, you know, Eric doesn't have that whole, you know, unspoken language that we have developed. And so he always scores Beau a lot more — a lot lower than I would score him — you know, just answering questions — because I... Some of his behaviors make complete sense to me. So it's in. But it's important because, you know, more than one person is viewing your child.
Julianna Scott [0:32:42] Right.
Kelley Jensen [0:32:42] And hasn't, you know, which experience brings...
Julianna Scott [0:32:44] Me to again — what a diagnosis actually triggers is a trip to the office supply store, among other things. Because you... Maybe now you'll want to organize your digital files, but, you know, I like an old school supply. And you're going to need to make copies of things. You're going to need to send things. Although, yes, digital is the way to be. But even if that means organizing yourself digitally — get yourself organized — because, you know, you've got lots of paperwork ahead of you.
Kelley Jensen [0:33:17] How did your children do at Office Depot or the...
Julianna Scott [0:33:22] Terribly. I mean, that was my alone time. Are you kidding? My binders are amazing. They're really cute. And inside are every IEP, every evaluation, every diagnosis, every behavioral plan — you name it.
Kelley Jensen [0:33:37] Oh, gosh. All right. In the short term, this is really big with me. When diving into understanding autism — really do a deep dive into what communication is. Because autism is, at its heart, a communication disorder. And if it's missed at all — when with young children — it's missed because they have language. They have language, but they don't necessarily communicate. And what does that look like? What is... You know, I kind of described a shorthand for communication that my son and I have. That is important because people who maybe never learn to speak can learn to communicate. They can have adaptive communication devices. And understanding what communication is — the relationship between, you know, two people — is where it's at. Right. So that's where the deficits are. It requires some study, because it goes right over everybody's head when they just want their kid to talk. Right.
Julianna Scott [0:34:27] Okay. So in the long term, the benefit of expanding the diagnosis and going into those comorbid diagnoses — it means more support, more available interventions.
Kelley Jensen [0:34:41] Absolutely.
Julianna Scott [0:34:42] So I think that that's important. So — stay educated about what? New medications, new therapies, new ideas for functioning. And we always say this — always looking through that lens of affordability, practicality, you know, and communication and goals. So always.
Kelley Jensen [0:35:01] And the family unit.
Julianna Scott [0:35:02] Right, the family unit. It's your unit. So, okay — what about our blocked?
Kelley Jensen [0:35:08] Okay, so our blocked. Do not utilize the services of a parenting coach for diagnosis. That is — yes — a big, hard no for me. If you're a coach, you don't have the background — the professional background — to be making a diagnosis, and you shouldn't be. And as a matter of fact, I think it might even be against some sort of a business license for you to be doing that. So don't be on the lookout for anybody that has a — even if they have a PhD — but the PhD is not in diagnosis. Just skip it. Skip right over it. Right?
Julianna Scott [0:35:41] Same thing with online diagnoses. You need someone to be observing your...
Kelley Jensen [0:35:44] Child. 100%. And a lot of times, live, in person.
Julianna Scott [0:35:48] Well, you...
Kelley Jensen [0:35:49] You touched on it earlier — video. Now, you know, everybody's got a video on their phone. They're taking a lot of video of their kids. In that — some people in some areas of the country don't have any choice but to use online diagnosis because they have nobody to do diagnosis wherever they're living. Make sure that video's included, though, and make sure that it's a — you should be getting instruction on what video they want to see.
Julianna Scott [0:36:09] Right.
Kelley Jensen [0:36:10] If that's what you have. And don't opinion shop. There's a lot of that going on right now. No, I think they got it wrong. Why are you opinion shopping? You know, try — at least try it out, right.
Julianna Scott [0:36:20] If you still suspect something's wrong, and you're not getting a diagnosis, and you really — in your heart of hearts — think that there's something else going on, and you want to get another diagnosis. And we're not saying you can't get a second opinion. But don't opinion shop to fit into, you know — to get certain services or do that. Don't do that.
Kelley Jensen [0:36:37] That's not right. Why do we think this conversation matters?
Julianna Scott [0:36:41] Well, it matters because, you know, diagnosis is a very important first step into unlocking understanding and the services. Why do you think it's important?
Kelley Jensen [0:36:57] I think it's important because everybody has sort of lost sight of where autism starts. It starts with someone else telling you your child is not meeting these milestones, or you are remiss in these things that are the very definition of autism. So an accurate diagnosis is extremely important. How to get an accurate diagnosis is extremely important to the conversation of autism. The rise in autism, and what interventions are appropriate for autistic people — and our...
Julianna Scott [0:37:27] Focus also on comorbid diagnoses — I think — is really an important conversation to have. Because, like we said, most people on the spectrum have other diagnoses, and it is so important to understand those — how they all work together.
Kelley Jensen [0:37:43] Thanks for listening today. If you like our podcast, please give us a five-star rating. We'd love to hear from you. Thank you again.
Julianna Scott [0:37:50] Thank you for listening to this episode of Refrigerator Moms. Don't forget to subscribe so you never miss an episode. You can also find episode notes, resources, and any Refrigerator Paper connected to today's discussion on our website at refrigeratormoms.com, where you can sign up for our newsletter. We'd love to hear your questions and future episode ideas. Reach out to us on social media or through our website. The information shared in this podcast is meant for informational and educational purposes only. It shouldn't be taken as medical, psychological, therapeutic, legal, or professional advice. If you have questions about a diagnosis, treatment, intervention, or any medical or developmental concerns, please consult a qualified healthcare or service provider. Don't rely on this podcast in place of professional guidance, and don't delay getting help because of something you heard here. The views and experiences we talk about are our own and those of our guests. They're not meant to serve as personalized recommendations for any individual or family. Listening to this podcast does not create any kind of professional relationship between you and the hosts or guests. Any choices you make based on the information here are completely your own, and we are not responsible for any outcomes that result from them. If this episode includes a Refrigerator Paper, you can find all sources and citations — along with additional notes — on our website at refrigeratormoms.com.