Episode 60: Dr. Melissa Neff on the Assessment Process for Neurodivergent Kids
In this episode, I talk with Dr. Melissa Neff, a licensed clinical psychologist in private practice in Missoula, MT in the United States who specializes in conducting psychological evaluations with children (ages 6-18) and adults. A lot of Melissa’s practice focuses on helping parents figure out what’s going on with their children and diagnosing things like ADHD and autism through the assessment process for kids, although she shared with me that one of her favorite aspects of her practice lately is working with autistic girls.
There are so many things I could have talked about with Melissa, but for today’s episode, we focused our conversation on the diagnostic process—what it involves and when and how parents can take the steps they need to pursue a diagnosis—as well as the pros and cons of getting a diagnoses, and more specifically, of having one or more labels attached to a child, both in their educational journey, as well as their lives as they grow into adults. This is one of those packed conversations with lots of great insights, and I love how Melissa’s passion for her work shines through. I hope you enjoy it!
About Dr. Melissa Neff
Melissa Neff, Ph.D received her Ph.D. in Clinical Psychology in 2008 from the University of Montana following the completion of an APA-approved pre-doctoral internship at Spokane Mental in Spokane, WA. She has extensive training in working with children and adults of all ages. Her areas of specialty are the diagnostic evaluation of psychological disorders and the assessment and treatment of trauma. Dr. Neff also has extensive experience in testing for ADHD, autism spectrum disorders, mood disorders, personality disorders, and anxiety disorders. She utilizes a strengths-based approach in her work in an attempt to foster resilience, preferring a team-centered approach to assessment and intervention.
Things you’ll learn from this episode
- The typical / “best” ages for kids to be assessed
- What some of the early signs are that a child might be on the autism spectrum
- How subjective is the process of assessing / diagnosing a child?
- What makes a “good diagnosis?”
- Why the current diagnostic process isn’t catching everyone, especially girls (for both autism and ADHD)
- The value of a diagnosis or label—pros and cons
- Tips for navigating the process of getting a diagnosis
Resources mentioned for the assessment process for kids
- ADHD is Different for Women (article from The Atlantic)
- Decades of Failing to Recognize ADHD in Girls Has Created a Lost Generation of Women (article in QZ)
- Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman
Melissa Neff 00:00
I often find myself teetering on this edge of, if I were to go by the DSM 5, which is what I’m supposed to do this, this girl does not meet criteria for an autism spectrum disorder or she’s sort of like, like what you said with Asher is she’s kind of on the borderline. But then there’s the question of is it valuable to give the person a label or not? And sometimes it’s really valuable to have that label and sometimes it’s not.
Debbie Reber 00:25
Welcome to the Tilt Parenting podcast, a podcast featuring interviews and conversations aimed at inspiring, informing, and supporting parents raising differently wired kids. I’m your host, Debbie Reber and today I’m talking with Melissa Neff, a licensed clinical psychologist in private practice in Missoula, Montana in the US, who specializes in conducting psychological evaluations with children ages six to 18, and adults. A lot of Melissa’s practice focuses on helping parents figure out what’s going on with their children and diagnosing things like ADHD and autism. Although she shared with me that one of her favorite aspects of her practice lately is working with girls who are on the spectrum. There are so many things I could have talked about with Melissa. But for today’s episode, we focused our conversation on the diagnostic process, what it involves, and when and how parents can take the steps, they need to pursue a diagnosis, as well as the pros and cons of getting a diagnosis and more specifically, of having one or more labels attached to a child both in their educational journey, as well as their lives as they grow into adults. This is one of those packed conversations with lots of great insights. And I love how Melissa’s passion for her work shines through, I hope you enjoy it. And before I get to the show, if you’re not already signed up for our Differently Wired 7-Day Challenge, I would love for you to join us. When you sign up for the challenge, you’ll get an email every day for seven days featuring a tweak you can make in your day-to-day life to change the way you think, feel and experience raising your differently wired child, you’ll also get a downloadable workbook to use as you go through it. And you’ll be invited to a closed Facebook group just for people who have gone through or are currently doing the challenge. Oh, and also, it’s free. If you want to join us, you can sign up online at tilt parenting.com/seven day. And now let’s get on with the show. Hey, Melissa, welcome to the show.
Melissa Neff 02:30
Thank you, I’m so excited to be here.
Debbie Reber 02:33
We have a lot to talk about, we were just prepping for this. We’re like, oh my gosh, this could be a miniseries, but we’ll see what we can get through today. Today, we’re going to be talking all about diagnoses, getting them how they’re done, and lots of other stuff. And before we even get into that, I just want to even touch upon the fact that it can be kind of confusing for parents to even know if getting a diagnosis is something they need to do. And that’s something I get a lot of questions from parents actually. And I know, especially with differently wired kids who are kind of flying under the radar, or maybe they’re not standing out so much, the pediatrician may not have any clue there’s anything going on, I know that our pediatrician was like, ‘No, this is all within the range of normal’. And even when I tried to describe things that were really tough or seemed, you know that they were very different from our friends’ experiences. And it was ultimately a friend who pulled me aside, someone who had a degree in child development who said, I think you need a little more information here. There’s something going on. And that of course, isn’t an easy conversation for a friend to have.
Melissa Neff 03:40
It’s definitely not.
Debbie Reber 03:41
No. And I’m glad she did that or might have been a few more years till we finally got around to that. So who is usually the one suggesting the assessment? So does that recommendation usually come from a teacher or from a pediatrician? Or is there harm in waiting too long to do this or harming doing it too early? Like how do people first begin to engage with you?
Melissa Neff 04:04
Great question. And I think a lot of different sorts of spider webs of answers there. I would say that in terms of the referral sources. So I’m in private practice in Missoula, Montana. And so I get my referrals. I don’t, I don’t advertise. I get my referrals from other therapists. I get my referrals from pediatricians as well. Of course, sometimes parents that I’ve worked with refer their friends, because they know they’re having trouble with their kids. Or I’ll get referrals from more folks in the community like community case managers or even sometimes teachers or special education paraprofessional kind of folks. We also have teams of school based mental health folks in our schools here and so I get a lot of referrals from them too. And so, just to kind of go into your question of when is it appropriate to get an eval? I feel like Gosh, it really depends, it depends on the kind of person that you are. And it depends on how troubling the child’s symptoms are in terms of how distressing they are to the child or the parent or the school, or how much impairment they’re causing. So there are people who are not neurotypical want, you know, wandering around this earth doing amazing things who don’t ever need an evaluation, because they’re not distressed by their symptoms, or their symptoms aren’t impacting their ability to do their homework or get a job or communicate with other people, you know, really, when people come to me the most is when there’s some kind of problem that needs to be fixed or solved. And people usually come to me for answers. And oftentimes, I’ll get referrals from folks who have been seeing this kiddo in therapy for like, two, three years, and they thought it was anxiety, and they thought it was depression, and they thought it was trauma. And then they kind of come to me and say, this kid can’t stop talking about dinosaurs, I think something else is going on. So that’s kind of a long answer to your question. But there’s so many reasons. And I will just say that one thing that I think really also happens is that there are a lot of people who come because they know something is a little different about them. And they really want to know why or what. And those are probably my favorite folks to work with, because they’re super motivated and open to whatever I have to say,
Debbie Reber 06:29
And what is the age, I’ve asked this to other people I’ve had on the show. And I know with our experience, I think Asher was five when we first did a full assessment. And he got a provisional diagnoses of PDD NOS and ADHD. And we knew at that point that he was highly gifted as well. But those were provisional diagnoses. And they said, come back in three years and we did. We ended up going to another place three years later. But is that a pretty typical timeline?
Melissa Neff 06:59
That’s a good question. I think that also varies, what I would say, my experience is that what we know about at least IQ testing, which is an important part of testing differently wired kids, because even though that may not, you know, sort of look at social communication issues, or restrictive behaviors, it does tell us a lot about a child’s ability to switch from one task to another or sort of that cognitive flexibility, executive functioning piece. And it does tell us if there’s a really giant split between their verbal abilities. And a lot of times with autism, you’ll have verbal precociousness. And sometimes you’ll have a real lack of visual spatial or abstract visual reasoning where kids can’t kind of look at things and figure them out without language attached to them. So my starting point is usually at the IQ test, because it gives me all that information, in addition to how quickly does a child’s brain move? What is their processing speed? Like how well they can pay attention. And so with that, the research on IQ really shows that age six is about where IQ tests are considered to be the most valid indicator of what your later IQ will be. So anything sort of before that, in terms of cognitive testing, should be considered very provisional. In terms of autism, I will say that, you know, I’m not sure what types of testing and I’m curious what types of testing the Asher had, but kind of the gold standard of autism testing is the ADOS. And the ADOS is an interactive test. That’s not just asking parents questions, it’s one on one with a child, having them doing a bunch of tasks that elicit, you know, social interaction and communication demands, and kind of look for those things. And you can do the eight us as early as I want to say two, maybe even a little younger. And I will say that just anecdotally, after having done assessment for, so I’ll be going on seven years in May, in private practice, for assessment, I can usually spot autism in like a friend’s kid or in the grocery store, or probably buy one and a half, two years old and or at least concern for autism, I would never just diagnose random people. That’s good, highly unethical. But when you start to see these patterns every day, in your practice, you start to go oh, you know, that child really doesn’t understand that her sister is not an object and is actually a person. So I think that there are definitely signs early on, but there’s so much confounding in terms of what’s normal, especially if you’re a first-time parent and you’re not sure what you’re seeing.
Debbie Reber 09:47
And would you say that’s the case for, and I don’t know what terminology you use Asperger’s or high functioning autism. I mean, I know that it’s a spectrum. And most of the parents in the Tilt community tend to be kids who are not severely impacted by autism, and they are on the spectrum. So would you say that that’s the case for those kids as well that you can still recognize that early? And if so, what? I’m curious to know what it is that stands out for you.
Melissa Neff 10:16
So I’ll give you some examples, tantrums and meltdowns. tantrums are really normal for young kids. But kids that are sort of typically wired, they usually get over it pretty quickly. Sometimes when you’re looking at a tantrum with autism, it is really based on a rigid belief that this is what was supposed to happen. And it didn’t happen this way. And I’m so upset about the injustice of this not occurring, I am so upset that we didn’t go down the third aisle of the grocery store, because that’s the way we always go. And sometimes that’s what the tantrums are about. And so that’s different than you didn’t buy me cookies in the grocery line. And I’m going to be you know, kind of a little, you know, what, for five minutes, but it’s going to go away. So there’s this inconsolableness, I think sometimes to the tantrums that has to do with that cognitive rigidity. Yeah. Also, I would say sensory, I think you can spot sensory processing issues pretty early as well, you know, you, you take one kid into the grocery store, or you take one kid to a baseball game or a concert. And you know, if you have the kid that’s covering his ears, and screaming, and that’s probably a good sign of sensory stuff. You know, the other piece that I see a lot in is sort of these younger kids. And this is really what I’m talking about right now is really outside of what I’m doing in my practice. But just the things that I noticed because this is kind of how my brain has become wired as I do this work. There’s often a lack of reciprocity that I’ll see very early on, even with my older kids on the spectrum where, you know, let’s say there’s a, there’s a family with a kid, that’s one and a half and a kid, that’s three and a half. And if the differently wired child is three and a half, I usually find that the one-and-a-half-year-old is pretending to feed me food, and is smiling when I smile, and the three-and-a-half-year-old is off doing his own thing. And when the interaction occurs, it’s really based on that kid’s terms. We’re going to play this, we’re going to do this, and they’re not super interested in my facial expressions, what I want to do, of course, kids want to do what they want to do. But even at a one-and-a-half-year-old, there is this incredible reciprocity in neurotypical kids that you don’t always see. It’s really fascinating.
Debbie Reber 12:32
Yeah, I can tell that you love what you do. I do love what I do. Yeah, that’s awesome. Okay, I have so many questions for you. Let’s see. I’m curious to know. And again, I tend to always go back to my own personal experience. But sure, in terms of the testing that Asher had, I know that the second time we had him assessed, it was the ADOS assessment. The first time I don’t recall, but it was at a clinic associated with the University of Washington, and it was supposed to be for? Well, I think just everything, and I really do remember filling out a lot of forms and questionnaires and that kind of thing. And they spend time with him as well, when we had the second assessment done, and she gave us the diagnosis, which was Asperger’s or autism spectrum disorder and ADHD. And I think there was also it was an oppositional defiance disorder, but it was in that same vein, it was some lovely.
Melissa Neff 13:30
Like intermittent explosive disorder things like that.
Debbie Reber 13:35
Disruptive behavioral disorder not otherwise specified. But I felt that even in the way she was explaining the diagnosis, she said, you know, she kind of broke it down. And she said, you know, this, I could have gone either way on this, I could have gone either way on, but I opted to lean towards the autism diagnosis, you know, she really kind of explained, or what I took away from that is, in some ways, pretty subjective. And I’m just wondering, in your experience, like, yeah, do you think that the tests like so subjective is it? What makes a good diagnosis, a diagnosis that is kind of solid and you can rely on because I think we get really confused about, is this really what’s going on? Or is this?
Melissa Neff 14:20
Yeah, yeah, I totally. I totally agree. I think this is an incredibly important question. I would say, as a psychologist, you know, we go by American Psychological Association ethics guidelines. And the standards for testing are that you really want to have testing that is informed by multiple people in multiple settings, with multiple methods, and always based on direct contact with the child. So I know that pediatricians will sometimes, you know, spend 10 minutes with the kid giving shots or whatever, and they’ll give the parent an ADHD questionnaire and the parent might circle all the highest numbers because their kids are driving them nuts and that’s not psychological testing, right? That’s a screening. What we do here is, first of all, we only work with tests that are normed and validated for and that we know measure what they’re supposed to measure. So there’s a lot of ethics in terms of the actual assessments that we even should be allowed to give. And so there are gold standards in the profession for sort of what those are. And those are based on, you know, lots of clinical trials with kids of different ages and different socio economic and ethnic backgrounds, gender, those kinds of things. So something like the ADOS, which is considered sort of a gold standard for testing for autism, is really great, because it actually technically is supposed to have an objective scoring system. And, all of our tests really do have objective scoring systems. But you’re right, there’s always a person behind that objective scoring system. And so what we do here in Missoula, I actually don’t do the ADOS, because I’m a private practitioner working alone. And I know, you can do it on your own. But we have in our town, more of a team approach to that, where they have a speech therapist and occupational therapist and a psychologist in the room with the child, and all of them are going together to do the scoring. So that it’s not just one person doing the scoring, it’s three people who are trying to score based on the objective, you know, sort of outlined criteria for how we’re supposed to score a test. So that I think gives more what we call convergent validity, like a lot of different people agreeing on the same thing. But you are never supposed to base a diagnosis on just one test. So I would say so much of what’s important of the testing processes, not only these validated tests, but getting information from the parent or guardian information from the teacher observation is really important. Sometimes I will go and I will observe these schools in class and kind of a structured setting, and then I’ll observe them at recess. Is anybody playing with them? Are they playing alone? Are they engaged in repetitive behavior on the swing, and they won’t get off. So there’s so much information, I think, in observing the child outside of some of these objective tests as well, you know, the key to things and to look for data that goes together, and you have data that’s all over the place, like teacher says, Oh, my gosh, this kid’s just defiant. And I test the kid and he’s got really severe dyslexia. So I think it’s easy for some of these kids to miscue or sort of look one way, when actually there’s a whole lot going on. So I think in order to really have a solid assessment, you’ve got to have all of these pieces in place.
Debbie Reber 17:50
That makes total sense. Okay, very interesting. So then you mentioned all these different factors that go into the test. And one of the things you talked about, or that have to be considered, and one of those was gender. And right before we started the recording, we were talking about the whole idea of girls on the spectrum. You know, I’ve had someone on the podcast before talking about that, and how it presents differently in girls. And I also just shared recently on the tilde Facebook page, an article from the Atlantic about a whole generation of girls who have kind of been missed getting a diagnosis for ADHD, and also that that presents differently in girls. So can you talk about the role of gender and when it comes to assessing kids?
Melissa Neff 18:36
That’s such a wide-ranging question, can I limit that to sort of autism and ADHD?
Debbie Reber 18:41
Melissa Neff 18:41
Okay, so I have been seeing an enormous rise in girls with ADHD and nonverbal learning disorder in my practice, and they slipped through the cracks most of the time. And I think a lot of the reason why girls on the spectrum don’t get diagnosed, there’s a lot of things sort of going into that. But one thing we know about girls’ brains, they’ve done some brain imaging studies of girls and boys on the spectrum. And it seems like girls have a little bit better of an ability to fake social skills and to mimic social skills where oftentimes with boys, it’s harder for them to I don’t know if it’s having a filter or copying other people or or maybe there’s a stauncher desire against copying. You know, a lot of a lot of kids on the spectrum, as you know, they don’t want to be anybody but who they are. And they’re strong in that. And that’s actually a really wonderful thing. So with girls, I think a lot of the reasons that they don’t get diagnosed is that their behaviors are not as loud or prominent or dramatic. But when you spend time with girls that are on the spectrum, you can see some really subtle things that sort of point to the fact that that might be an appropriate diagnosis. For example, one of the things that’s been associated with autism and some people is what we call flat affect, to sort of not showing your emotions on your face. And what we know from research actually, is that people with autism don’t lack empathy at all. In fact, they are incredibly empathic, it just doesn’t always come through on their face, right. And they can’t always read it on other people’s faces. So with girls, a lot of times, you’ll have girls who are very quiet, and they don’t outwardly show that they’re distressed. And then you might find their journal, and they’re suicidal and depressed because nobody likes them. Or her, I will also see girls that have really exaggerated facial expressions that look like they’re on a soap opera or something, you know, when they cry, they’re sobbing, and then they look at you to make sure that you’re getting that they’re sad. So I think there’s, in autism, I think there’s often a disconnect between what you’re actually feeling on the inside with autism, and what you’re able to show on the outside. And so to the observer, it almost kind of looks fake or exaggerated. And that’s a lot of what I have to work with parents on is that, no, these are actual, these are actual symptoms in your child. And just because they sort of come out looking a little fake, it doesn’t mean they don’t experience them as really intense. Yeah, and I would say too, with girls, their obsessive interests tend to be within sort of normal range for what you would expect girls to like. So girls on the spectrum typically tend to like things like horses, animals, to feel much more comfortable with animals than people dolls, because they’re learning social play through play with dolls, where boys maybe aren’t trying to do that. Whereas with boys, you know, I can think of a two-year-old. I work well, I didn’t work with him when he was two. But a story his mom told me when he was two that she couldn’t get him to soothe or fall asleep at night unless you read to him from a medical textbook. Right. And so with boys, we often see this, like, I am interested in Middle Eastern history from the 1800s to the 1840s. And they tend to be maybe a little more specific, or a little odd. Although we do see a lot of sort of, quote unquote, normal interests, like dinosaurs in Minecraft. Interestingly, what we find with girls also is that they tend to be drawn to the theater, because that’s where they learn how to show emotions. Interesting. I know, it’s so fascinating. So I feel like that happens a lot. And also another piece with girls is that typically went with boys on a spectrum, they’ll come in and say, I don’t have any friends. Or they’ll say I’m friends with everybody. Everybody likes me, because there’s that lack of self-awareness that maybe kids don’t like them. And with girls, girls are I think, are a little more forgiving, sort of quirkiness. And usually girls on the spectrum have one friend, or a best friend who shares their interests. And so I’ll have parents come into me and say, well, well, my kid can’t be autistic because she has a friend. And I’m like, what will Autism is a spectrum? People with autism have friends. Lots of people don’t. And there’s a lot of in between? Yeah, yeah. So I think those are some of the things that get in the way of the diagnosis. And I think there’s just a general belief that girls can’t have it and don’t have it so people aren’t looking for it.
Debbie Reber 23:12
Same with ADHD, I would imagine.
Melissa Neff 23:15
Yes, absolutely. Because with ADHD, some of the gender differences are, you know, girls tend to be less hyperactive, and more inattentive, whereas boys, again, are sort of louder and more hyperactive and impulsive, et cetera, et cetera,
Debbie Reber 23:29
Right. So interesting. Do you feel like? I mean, it seems to me that there’s a growing awareness of these differences. So do you feel like people are getting more tuned in to recognize things? Do you feel like the criteria for how assessments are made is going to change to be more inclusive or to recognize girls?
Melissa Neff 23:50
I hope so, you know, I often find myself teetering on this edge of, if I were to go by the DSM five, which is what I’m supposed to do this, this girl does not meet criteria for an autism spectrum disorder, or she’s sort of like, like what you said, with your Express with Asher, she’s kind of on the borderline. But then there’s the question of is it valuable to give the person a label or not? And sometimes it’s really valuable to have that label and sometimes it’s not.
Debbie Reber 24:17
Let’s get into that. That was my next question. Let’s what? What is the value of a diagnosis, kind of pros and cons? I know it’s a whole show, but.
Melissa Neff 24:27
Pandora’s box. So diagnoses exist for good intent. Right. So the idea is a diagnosis is a shared language that professionals and parents and individuals can use to talk about something that’s really specific and if we know what it is, then we know how to treat it, or we hope we know how to treat it right. There’s still a lot of fledglings you know, attempts to treat a lot of these things. So that shared language is essential. I think you had mentioned, and you’ve mentioned in some of your podcasts, you know, getting service is a huge reason for having a diagnosis. So if you’re going to parent in a traditional way, in the sense of my kids going to public school, my kids going to, you know, go to Girl Scouts or Boy Scouts, my kid’s going to be on the sports team or on the robotics team. And kind of be more in that mainstream world, I think a diagnosis really helps because getting something like an IEP with an educational diagnosis of autism or ADHD, would help the teachers to understand what they’re seeing to understand, okay, this kid is not just loud and annoying, he literally can’t stop moving his body. So let’s accommodate him by allowing him to stand up during class or allowing him to sit on a little bouncy ball or allowing him to touch a little fidget toy. A lot of times, teachers who I think are so undervalued and underpaid and have the hardest job, almost the hardest out there is second to parenting. They don’t know what they’re seeing. And it’s easy for them to conclude, especially if they’re burned out that this kid is just trying to push their buttons. And a lot of the times differently wired kids just don’t learn in the same ways. So if you’re trying to get an IEP, you have to have an autism diagnosis or an ADHD diagnosis, if you want to know what kind of treatment to do, let’s say you’re doing talk therapy with somebody who’s on the spectrum. And that might be great for them because they can come in and talk about dinosaurs for 45 minutes, but they may actually really be needing to learn social skills. So identifying what it is, can help you figure out what to do about it. I also would say, specific to children and adults on the spectrum because I am also getting an influx in my practice of adults. As Asperger’s becomes more prominent in the media, on TV shows and on the news, people are starting to go, Oh my gosh, I’m 56 years old. And this is me. Sometimes I think especially with people on the spectrum, there is this desire for knowledge, this desire to categorize things. And there is this real relief and knowing I’m not just wacky and quirky, I am this, and I belong to this group. And my whole life, I never belonged to a group. And so now I get to call myself an Aspie. And, and, and I love that term because it’s so positive. It’s so affirming. And people love to call themselves that. And so my sense is, especially with people on the spectrum, especially as they get older, there’s this relief of oh my gosh, that’s what it is. That’s why I’ve never known how to laugh at a joke that I don’t find funny. That’s why I don’t understand what these kids are talking about when they’re making metaphors or being sarcastic. And I think there’s, so I think there’s a relief sometimes in the diagnosis.
Debbie Reber 27:49
Absolutely. I mean, I know that was the case with Asher when we told him it was kind of like, okay, that makes sense.
Melissa Neff 27:57
And he was probably like, duh, I know that.
Debbie Reber 28:01
I knew I had superpowers.
Melissa Neff 28:02
Exactly. I like to say that people with autism are saving the planet. Because I really take that perspective, I don’t have you read Neurotribes, I’m embarrassed to say that I have it and my son has read it. And I haven’t gotten through it yet. So I know you’re so busy, I’m going to just encourage you to read it. Because really, sort of the whole point of that book is showing, you know, these are genes that have survived throughout history. And there are ways in which we created environments where people with autism could thrive instead of being outcast. So that’s where I see people are changing the planet with autism, because what they used to do back in the day, and they talked about this in the book is they used to let people just go in the shed for three days and work out their theorems. And you know, three days later, Einstein is an amazing scientist who couldn’t make it through mainstream school. So
Debbie Reber 28:54
Yeah, so interesting. Yeah, he was very stoked about that book. I Yeah, there was a lot of like, hey, Mom, listen to this are escaping me quotes from the book. All right. I will try to pick it up this weekend. What would you say? Then are there are any downsides to having a label? And I know there are a lot of parents who are listening who may be concerned about telling their child what’s going on with them, because they don’t want them to feel worse about themselves. Or, you know, obviously, there are stigmas associated with certain diagnoses. So in your opinion, what, what’s the downside?
Melissa Neff 29:31
Yeah, I think there are a lot of downsides. And I think what it really kind of comes down to is readiness to know, because I have had a few people not come back for results. And that’s very, very rare. But I recently had a mom come in who was just wonderful with a really precocious child that I pretty much thought might be on the spectrum but wasn’t sure and she refused to have me even give her some forms to even look at it because she couldn’t sort of manage the idea that that could be a reality. And that’s fair, people are where they are, and they don’t always want to know. So I think the drawback is that if an outside party is pushing the need for a diagnosis, but the family doesn’t want it, or the child doesn’t want to know, or isn’t interested in changing, I think that that can be potentially shaming for people. Or, of course, people have a lot of stigma around that. You know, I also think labels can sometimes become excuses for people, I see this probably, especially with kids with ADHD if they’ll go around and say, oh, that’s just my ADHD, I can’t clean my room. And I’m like, Well, you can, you’re going to need a certain kind of help and a certain kind of parenting to clean your room. But don’t tell me just because you have ADHD that you can’t do these things. So I think sometimes people use it as an excuse. I think also, if you’re going to be a non-traditional parent from the start, you know, think about my brother, he’s got a one-and-a-half-year-old who is an absolute delight. And she appears to be neurotypical. But who knows. And they have sort of a Waldorf setup in their house where she learns as she learned, she taught herself how to potty train. She’s one of those kids. And they’re going to do Waldorf schooling and if she were to have an issue, they wouldn’t, which is ironic, because this is a family member of mine, but they wouldn’t seek help. That’s just not the way they do things. And that’s totally fine. Because they live in a community where diversity and neurodiversity don’t need to be labeled. They’re just accepted, which is really wonderful.
Debbie Reber 31:31
Where do they live?
Melissa Neff 31:32
Yeah, I know, you’re like, where can we go? Ashland, Oregon?
Debbie Reber 31:35
Oh, yes, I have been there for the Shakespeare Festival. It’s a great community. Yeah, I could totally see that.
Melissa Neff 31:40
I would say Missoula, where I live, is a lot like that. But it’s just not quite as accepting in the same ways. And Ashland is a smaller town. But so I would say if you’re going to go the non-traditional route, if you’re going to homeschool, if you’re going to do Waldorf, there may not be a need to diagnose. I think what happens as people get older, especially on the spectrum, is that they have always felt different, and it helps them to know why. So there’s that benefit. But then I would say, there’s a lot of kids on the spectrum who go, oh, my IQ is 126. And then they go to school and tell everybody I have Asperger’s. And my IQ is 126. And that’s a downside to be great. Right. And so I actually don’t usually give kids any numbers. And it’s always the ESPYs that want their numbers because they’re always really high. But oftentimes, there’s something that’s not quite clicking as much. And so they don’t really want to hear that part of it. So I’m very gentle in the feedback that I give kids, especially depending on their age.
Debbie Reber 32:42
Yeah, it’s interesting, the IQ piece, when we had Asher assessed, we had had his IQ testing done separately, because of schools we weren’t looking at. And, you know, he was a kid who taught himself to read when he was two. So we knew that he was a bright child, you know. And so we were still looking at a traditional public, a private school route that caters to gifted kids. And so, but then when we did take him in to get assessed, we were told that IQ wasn’t factored in at all, as part of their assessment, which we found very confusing, because just, you know, according to things we had read about highly gifted kids, a lot of the characteristics that gifted kids have can also overlap with other things that are going on. So it’s interesting to hear that that’s a piece of your diagnosis.
Melissa Neff 33:29
It’s a huge piece. And you know, I do have to say everybody does things differently. And so, you know, I’m a clinical psychologist, and not a neuropsychologist. So clinical psychologists, I don’t do a set battery, whereas neuro psychologists often or clinics sometimes do a set battery, this is what we do. This is how we look at it. I really look at the whole person and say, what does this person need what? And then as I’m going, I start to pull more forms out and say, I’m sorry, mom and dad, I have to make you fill out some more forms because now I’m wondering about this. And they’re kind of rolling their eyes at me. But I think that thoroughness is important. I think it’s hard to say that the IQ test isn’t helpful because for me, even in the observation part of an IQ test, how does a child do with shifting task demands? How does a child do when you ask them to pay attention in certain ways? How does a child do with non-preferred tasks? Is the child interrupting the test to talk about, you know, the history of physics? All of those things are really Yeah, it’s information. It’s all information. And the giftedness I mean, if I just went in it, but then conversely, if I just went on IQ, I might miss something. So I had a kid once was telling me you know about the space time continuum, very articulately, and he was probably six. And it’s awesome. I know. He was an incredible little guy, and he has an amazing, amazing set of parents and so I know he’s going to be okay, but We came out to take a lunch break. And he looked at me and he said, hey, you know that stuff that they have with the noodles and the cheese? And I said, Oh, macaroni and cheese. And he said, Yeah, I want that for lunch. Can you make me some? And I said, well, buddy, you know, I don’t have mac and cheese at my office. I’m not a restaurant, you know, I have, I have snacks here, but then there was a huge fit for 45 minutes about me not having mac and cheese and the poor mom, I’m so sorry. And I’m like, you don’t need to apologize. This is information. Totally. So I guess my point, you know, is that you can’t just go on one thing, but so much of what we do, we do find within those little moments that aren’t even actually part of a standardized tests, and they’re so telling. So I think those parts are just as interesting as the others.
Debbie Reber 35:48
I have a question about, and I don’t. I don’t actually know what my question is, but I want to hear your thoughts on this. And then I will wrap up. I know that when we were looking to get Asher assessed, you know, we were living in Seattle, which is a very progressive city. And there’s a lot going on a lot of alternative education paths. We still had months and months of waiting lists and people there. There were so few places that were available and the waiting list was long. And I was like, but there’s such a need clearly. I mean, there’s so many of us, and then it’s so expensive, you know? Yeah, what is your take on them? And how?
Melissa Neff 36:28
Oh, my gosh, yeah, I I couldn’t agree more. Yeah, I couldn’t agree more. So here’s, you know, we’re just to kind of flip that just to kind of tilt that a little bit. I would say I live in Missoula, Montana, where we don’t have anything like that. We have a few alternative schools and private schools that are wonderful. We have an international school where kids learn Spanish, we have a really creative, individualized learning kind of school. And we have sort of a group homeschooling network. But there, this is a huge problem that we are really lacking in resources. And there are some states that sounds like there were some things in Washington, I know Utah has some schools for kids with autism, we don’t have any of them in Montana. And so this is sort of the golden question that parents asked me, how do I teach my kid and not everybody is willing to or able to do the homeschooling thing, you know, teach to their interests. But I couldn’t agree with you more that there’s such a huge need. And if that was sort of my realm in life, I would I wish that I would have time and resources to build schools for kids with autism, because and I actually believe that really, this is going to fall on the public schools where they’re going to really need to consider having, like, sensory friendly buildings and, and those kinds of things. Because, you know, if the statistics are true, one in two people are going to be on the spectrum by 2050. Really have got Yes. That’s the latest statistic.
Debbie Reber 38:02
Melissa Neff 38:03
Wow. Yes, yes, that’s every other person. So if we are going to still try to fit the square peg in the round hole in which already doesn’t work? No. So yes, we need private schools. But I think it’s going to have to fall on the public schools to create autism friendly, at least classrooms, if not buildings, and then and then you’re going to have people sort of who are going to argue that inclusion is more important. And in some ways, inclusion is very important. But ideally, and I think you’ve probably, I would think you would agree with this, it’s just that the best way for these kids to learn is to learn based on their interests and their passions. And that’s, that’s how they’ll learn science and math. And reading and writing is through the things that make them passionate and the things that will help them change the world. And that’s not it’s not set up that way in the public school system. No. So it’s the million-dollar question. And I think that’s the next realm of what really needs to change.
Debbie Reber 39:00
Well, I like your idea, I think you should get started on planning that school and just let you know, when you have it up and running, and
Melissa Neff 39:07
When you’re going to move, move back to the state or Well, or maybe I might need to move there with everything that’s happening in this country. And
Debbie Reber 39:15
That is a whole other episode.
Melissa Neff 39:18
Debbie Reber 39:19
Just one last question, too, about the assessment process itself. In your experience, you have a long waiting list for people to do this or any advice for parents who want to navigate this process who were like okay, when needed an assessment now how do they go about doing that?
Melissa Neff 39:38
It’s really tough. There’s, I don’t know that there any sort of forums that say in your state, here’s where you should go. So it’s sort of a word-of-mouth kind of thing, where you live and sort of who does what and like I said, I get most of my referrals just from folks in the community since I’ve been working and living in this community since 1999. In the mental health field, but you know, it’s tough because it’s frustrating for parents, because they’ve been waiting for six years to know what’s going on with their kid, and now they have to wait three to six more months to get in just to see me. And then they have to wait three weeks for a report. And then they may not want to hear what I have to say. So it can be very frustrating. And sometimes, you know, depending on the insurance, some insurances, most insurances are really pretty good about covering psych testing. But I have to tell you that there was one insurance company that just told me they don’t cover any autism codes, which wow, I said, who can I call? Who can I call because I could talk with someone and talk to you about the statistics and the fact that this is a very real thing that’s not going away. And there’s a lot of people who need help. So I would say that it really kind of depends on your local resources. And one good way that maybe get connected to that is through like you were saying, through some universities, they often have counseling centers, things like that. We have a place called the Child Development Center here in Missoula, other mental health centers often do those kinds of testing. That’s usually where sometimes the school will do the testing if you request it directly.
Debbie Reber 41:07
Yeah, I don’t think our insurance covered our testing at the time, but maybe things have changed. And
Melissa Neff 41:12
Well, I accept mostly insurance, I would say that the great bulk of my practice is insurance and Medicaid covers it private insurance. I think the only insurance that I’ve had trouble with is TRICARE, United Health Care, which is government insurance for government employees, or veterans. Wow. It’s really sad. And also, I would say, nobody’s covering the autism code for adults, which is a whole other conversation, because it’s always been considered kind of a childhood disorder. But this is not something, differently wired doesn’t go away, right. Yeah,
Debbie Reber 41:50
Yeah. Yeah. So interesting. Wow. Okay, this has been fascinating for me. I really enjoyed it. I really do have the best job. I just get to talk to people and get all my questions answered. And luckily, it benefits all my listeners. So just thank you. Thank you so much for taking the time and sharing all this with us. And I would absolutely love to have you back on the show to talk more. I have a feeling this is going to be a very listened to episode and, and we’ll see what kind of feedback we get. But thank you again for coming on the show today.
Melissa Neff 42:24
Thanks again so much for having me. And thank you for doing this. When I found your website, I got so excited to know that there are people like you out there really trying to make a difference, and it is making a difference. So just know that,
Debbie Reber 42:37
Yay. Thank you. Yay. You’ve been listening to the Tilt Parenting podcast for the show notes for this episode, including links to the resources Melissa and I talked about, visit the show notes page at tiltparenting.com/session60. If you like what we’re doing through this podcast and you’d like to support us, we will welcome your help. There are two easy ways to support us. One is to become one of our funders through our Patreon campaign, which allows listeners to make a small contribution towards the production of our episodes. You can find out more at patreon.com/tiltparenting. The other is to leave an honest review or rating for the podcasts on iTunes. It only takes a minute, and it really helps us get more visibility in the crowded podcast space. Thank you so much for considering helping us. And as always, thanks again for listening. For more information until parenting visit www.tiltparenting.com
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