By: Laura Petix, MS OTR/LEPISODE 105


When we begin to wonder whether our kids would benefit from some kind of evaluation, the next steps can be hard to find.

I’ve seen questions from so many parents: “Who do I need to talk to?” “What can I expect at an evaluation?” “What if I don’t agree with what the evaluator recommends for interventions and therapies?”

I have been a witness to Dr. Alex Reed’s advice to parents in just these situations, and I knew I had to amplify her voice of knowledge and empathy so that so many more of you can benefit. I’m so eager for you to hear her sage advice!

Dr. Alex Reed

Dr. Alex Reed is a clinical psychologist who specializes in the assessment and support of neurodevelopmental diagnoses across the lifespan. She and I are both contributors in Dr. Becky’s Good Inside community and she cares deeply about showing parents how they can be neurodiversity-affirming and confident advocates for their children. To this end, she shares her wisdom in an Instagram account, @dr_alex_reed.

What you’ll hear in this episode:

Developmental pediatrician, clinical psychologists, neuropsychologists, oh my!

In the world of neurodevelopmental evaluations, you have probably heard one or all of these terms and may wonder what they are, and who you might need to see in your particular situation.

The evaluation process

Naturally, the process will look different depending on what is being evaluated. An Autism evaluation will look very different from an evaluation for dyslexia, for example.

For the sake of simplicity, Alex took us through some common steps for Autism and ADHD evaluations.

  1. The interview. The clinician will interview the parents based on the child’s history and what’s needed. For an Autism evaluation, a psychologist may ask questions about the early years of childhood to see if it’s going along a predictable pathway or if it’s diverging from the norm.

  2. The assessment. For an Autism evaluation for a young child, the assessment will be very play-based. Kids typically have a lot of fun with this assessment. For older kids, it will often be more interview-based, asking questions about friends, emotions, relationships, trying to see their patterns of thought, responses to social cues, etc. An Autism evaluation will usually also include a cognitive measure as well. These assessments can take one to three hours total and may be broken up into up to three sessions.

  3. Collecting forms. Another important part of an evaluation is getting input from anyone else who has input on the child’s development: teachers, caregivers, even extended family members if appropriate.

  4. The feedback session. Parents come back after all the information is collected and assessed, and are told the finding of the evaluation as well as recommendations for next steps. See more below.

How to advocate for your child before and during an evaluation

Alex reminds us that parents are the ones in charge of this process. It may seem as though parents should just follow along with what the evaluator says, but she encourages us to feel confident in our advocacy for our kids, even through this process. Here are some ways we can do that:

The feedback session

Deep breath. This can feel heavy, so we’re dedicating a whole section for this. Here are some tips to get you through it.

  1. Make your voice heard.

    Alex reminds us that sometimes clinicians, ahem, *forget* or were not trained in bedside manner. Which is to say that a matter that should be handled delicately, with empathy and understanding that this can be very heavy for parents can sometimes not be handled so delicately. It’s helpful when evaluators take time to recognize that parents are on an emotional rollercoaster, that they may be feeling like their lives are suddenly changed… but some clinicians may only be thinking of passing off information to you.

    If you find yourself in this situation, you may absolutely pause the meeting and say something like, “This is a lot.” A psychologist may need a reminder that there are a lot of emotions going on.

  2. When you receive referrals for ABA or other interventions that don’t align

    If a clinician brings up a therapy that you’re not interested in for whatever reason, you can nod and leave. Remember that these recommendations, whether they’re therapies, medications, whatever – are never mandates, just recommendations. You have every right to say, “That doesn’t sound right to me. What else you got?” (or something more professional, if you like!)

  3. Therapies and waitlists

    Many therapies are infamous for their long waitlists and limitations due to insurance coverage. Alex tells us that often Occupational Therapy can have shorter waitlists (compared to speech therapy, for example), and that OT is such an invaluable tool for many of our neurodivergent children. It’s often misunderstood and many think that it’s solely about fine motor therapy, but the sensory and emotional regulation aspect of OT can be incredibly helpful.

  4. The right fit

    Just like you can shop around for a psychologist for an evaluation, you can do the same for whatever therapies you pursue. Alex reminds us that finding the right fit is famously one of the best predictors for success in therapy.

The episode is brimming with even more wisdom about how we can be the best advocates for our kids before, during and after an evaluation. Listen to the episode to get the full picture, and be sure to follow Dr. Alex Reed on Instagram @dr_alex_reed.

Episode Links

Journey from Referral to Recommendations: what to expect (Tips from a Clinical Psychologist)
Laura Petix 6:46 Yay. Alex, I'm so excited to finally have this conversation with you. We have so many sideline conversations that it's time that the world hear our conversation out loud because there's so many gems that you share with me all the time in in WhatsApp and on our good side threads. Every...

Laura Petix 6:46 Yay. Alex, I’m so excited to finally have this conversation with you. We have so many sideline conversations that it’s time that the world hear our conversation out loud because there’s so many gems that you share with me all the time in in WhatsApp and on our good side threads. Every time I see your name pop up on a thread and your comment I always know it’s gonna be cold so I’m so glad to have you here. Speaker 1 7:11 Hi, Laura. I am so excited to be here and I’m so excited that you’re making time for this important topic today to in particular, yes, Laura Petix 7:20 okay. So let’s just jump right in. So you are a clinical psychologist. So you do mainly the diagnosis, the assessment like the evaluation and diagnosis portion, and then you refer out towards for intervention and supports. Is that right? Yeah, Speaker 1 7:40 I’m a clinical psychologist. I work at a children’s hospital in Ohio. And so psychology has different tracks, right? There’s their social and developmental psychologists, those ones tend to be primarily like academic or research based positions. Counseling psychologists are ones who primarily do like psychotherapeutic interventions. And then clinical psychologists like me, are people who do assessment and therapy and sometimes dabble in academics and research too. So we have a lot of hats but if you’re going for a psychological evaluation, you’re coming to see someone like me. Laura Petix 8:16 Okay, okay. Thank you for clearing that up. The one of the first questions that I have for you, I often get asked from parents is when they’re already starting to have questions about their child’s behavior or development, and they’re thinking about getting an evaluation. A lot of times their first thought is to go directly to the pediatrician. Of course, it’s always good to look them in. But when they asked me who is the best person to diagnose my child, I think sometimes they mean specifically autism, but sometimes at the very beginning, we don’t know which diagnosis we’re thinking of. So is there a way that you can explain the different avenues between seeking a diagnosis from your pediatrician versus developmental pediatrician and then clinical psychologist and neuro psychologist? Those are kind of the four main people I think of. Speaker 1 9:09 Yeah, absolutely. And it is so confusing. And the other confusing part is that many people can do the same job ultimately, but some people have specialty areas. So typically, how it works is that you go to your pediatrician or another doctor’s appointment and you or that provider have concerns about your child’s development, or you say the school has concerns about my child’s development. And you’re just talking to your pediatrician about it. Typically, that’s where this conversation happens. It doesn’t have to happen here, but that’s ultimately where I get a lot of my referrals from is from primary care. So your pediatrician, and pediatricians generalize in children’s physical health. And they tend not to be experts in mental health. We all have our silos. Developmental pediatricians kind of emerge more into that area. They have a specialty in childhood development in particular, some developmental pediatricians also do evaluations for things like autism and ADHD, more complex questions, though they typically refer out a neuro psychologist is basically a clinical psychologist like me, who has had one additional year of postdoctoral training in their specialty area of assessment. And so neuro psychologist 10 Typically, historically, focus on things like traumatic brain injury, if they’re working with adults, things like dementia, other medical complications that could impact the psychological profile clinical psychologists like me, typically Don’t dabble so much into like the traumatic brain injury side of things. But there are neuro psychologists to who don’t do that either, which is sort of what complicates the picture. So I’m neuro psychologist do just specialize in neurodevelopmental disorders. But I don’t think that that’s historically the path that neuropsychologist took. Typically, it’s because they’re more interested in the medical things too. So psychologists like me, are interested in questions. Well, I should say, there are clinical psychologists who do all sorts of things, but once you do assessment like me to focus on an area, typically like neurodevelopmental disorders in the DSM and we’ll talk about what the DSM is later. neurodevelopmental disorders is sort of like an umbrella category that fits in under its wings, autism. ADHD, learning disabilities, like dyslexia, dysgraphia or other things like tic disorders. And those have like an intellectual disability. So when I was looking for it, and those typically have intensive testing that needs to be done to confirm or deny, and so that’s kind of my job is to parse apart the referral question. What are you asking? And is it something that I can meet in the referral? Laura Petix 12:13 Yeah, the that that helps, for me, at least, I can think of each one of those professionals that I know in my, in my circle of network, and it helps me identify Okay, that’s why I’ve sent this very particular more complex type of learning style learning need that no one could quite figure out to go to neuro psych but it sounds like that’s not necessarily the first step. So to speak, alright, and it also feels like it’s less accessible and more expensive for a lot of folks. I’m not sure if that’s a common thing for insurance to not cover Speaker 1 12:45 for that IDs, and B and the other thing is, is that neuropsychologist typically, although some do typically don’t focus on autism, autism has sort of like taken on its own little niche with clinical psychologists like me who do that testing, with the exception of maybe adolescents who are presenting later in life with quote unquote, lower overall support needs or things like that. They might be seen by a neuropsychologist, but kids who are sort of complex or who have very significant symptoms at a young age. Those are the ones that I typically see how it works in like a hospital setting is you tell your pediatrician basically you have these concerns, your pediatrician will put in a referral for you. And if you’re in the hospital setting, then you wait for someone to call you for an intake, you get that intake, which is sort of like a triage to make sure you’re where you need to be. And then if all is well then you’re scheduled for a psychologist like me for that evaluation and that triage process will determine whether you go to a neuropsychologist or to a psychologist like me, Laura Petix 13:51 gotcha. Okay, that totally makes sense. Okay, so while you’re already in this process, let’s assume the parents are set up with this clinical psychologist like you and they’re preparing for the evaluation. I would love if you could walk parents thrill what to expect, I’m sure maybe there’s different things to expect whether it’s an autism or ADHD evaluation, or if there’s some sort of like bigger thing first before we focus so if you could walk us through your process of what parents can expect from that until they sort of your their file is closed for you and they move on to their intervention piece. We could talk about that after that. Yeah. So Speaker 1 14:32 like you said, there are different kinds of evaluations out there based on the referral question. So like, are you attuned to possible symptoms of autism? or ADHD or learning disability or something and development just not going as you expected? Are you looking for clarity because something is just hard behaviorally and you want an answer? Those are the kinds of questions that a site called a psychological evaluation can answer. It’s typically once you’re connected with a psychologist, that referral question is clear to the person who’s going to do your evaluation like me, because you’re reading through the chart ahead of time. And then how it works in a setting like this is that typically parents come in and we will do an interview with them based on the child’s history and what’s needed. So if it’s an autism question, we’re probably gonna dig back to the early years if there are not already there already. And talk about the developmental sort of trajectory. And seeing if it’s going along on a predictable pathway, or if it’s kind of diverging from the norm, which is okay. But it’s just indicative of certain, you know, possible symptoms of like things like autism or ADHD. Then, after that interview, typically, I will be testing the child and so if it’s a little kid and it’s a question of autism, for example, then we’re doing a very play based assessment. Kids typically really like that assessment. I know that getting evaluated for autism in particular can be very nerve racking for parents, but typically for the little kids. It tends to be really fun, because it’s really just play based for the older kids or kids who are very verbal. It’s more of an interview based turns out to be tedious, just asking questions about friends and emotions and relationships and seeing their patterns of thought, seeing their response to like social cues, things like that. In the interview, and the gold standard autism evaluation, for example, is also going to include other things like a cognitive measure to make sure that cognitively we’re where we’re supposed to be. And different kinds of evaluations will have different kinds of batteries and they can last anywhere from one to three hours in my practice, and they can recur as many as one to three sessions too. So you might be coming back just so we don’t tack a little brain all in one day. Sometimes we do come back for more. Yeah, so that’s the process typically, then we’re collecting teacher forms if we can parent forms, if we can anybody else who has input on their development. Super, super helpful, especially for questions of ADHD. How are we doing at school? What is our learning style like? Some parents are really nervous that kids do really well at school and that teachers won’t see anything. Typically, we’re good at seeing past that we can always talk to teachers and see, you know, what is the behavior like are they really quiet so they’re not disruptive? But they’re not really attending to other kids? Or or are they really like engaged what is going on? And then the last step is the feedback session, and typically parents come back for that session. And that’s where we go over the diagnosis. And all the recommendations for next steps was a very lengthy answer to Laura Petix 17:50 us from start to finish and I love it and I want to make sure that we tackle I want to get some tips for parents going through that process. So why don’t we start from the beginning again, so when you they are preparing for that evaluation for the interview process. I’ve been through this and I thought, not through the specific autism evaluation, but when I was with, you know, a psychologist for my daughter, and then also a developmental pediatrician, and I tend to black out a little when I’m asking all these questions, even though I know it all so well. And then there’s also that piece of the My kid is also in the room with me, and it’s so hard to want to as someone who wants to highlight her strengths, and also give this person sitting in front of me a very clear picture of how we’re impacted. So what tips do you have for parents going into the evaluation? Things that they should highlight things that they not they shouldn’t highlight and how they can come across as the best advocates for their child, especially if, you know, we want to manage what our kids hear about certain things, and still highlight the need that we have. That makes Speaker 1 19:05 so much sense. There are a couple ways we mitigate that here. That can’t be done everywhere. But sometimes what we’ll do here to mitigate the overhearing process is I will do the interview while a technician who is trained in the assessment will do the testing with a kiddo and then I record it and go back and watch sometimes I can do that. But on in other situations there are some things we can do. The clinical interview portion at the beginning where you’re talking all about your child’s history can be done like via telehealth, it can be done at another time. Your child does not necessarily have to be present unless there’s some reason and if the child does have to be present, then you can also schedule a second appointment where they can observe them either in vivo live or via telehealth. There’s no reason why they have to be there for that portion Laura Petix 19:54 so they can ask for that is because I’m sure Mike just go through the protocol and parents like miss it. Like I didn’t know you could ask for those things. Right? Absolutely. It’s Speaker 1 20:04 really unfortunate that that’s yeah, it’s not made clear. And there’s so so much self advocacy that needs to happen throughout this process and advocacy for your child. I mean, that’s basically what this whole process is anyway, that it is overwhelming. And so yeah, I’m really glad you brought that up. So yes, one recommend during the clinical interview via telehealth or at another time when your kids aren’t there, okay? To videos can be really helpful if you can like dig up videos of behavior. So if your child’s like not always doing this thing or you think like, well, they’re going to perform in front of you. They’re not going to do it. I find the videos from home really, really helpful, or playdates or things like that if you’re seeing the behavior, they’re like, this is the one try to get it on camera so you can bring it back and we can talk through what it is. So advocating for a different setting for the interview. Videos can be really helpful and then finding a release of information so that the psychologist can talk to other people in the network, whoever you’re okay with that. That can be really helpful too. If you’re like, well, she only does it at grandma’s or she only does it at this other person’s house or whatever it is then having the release of information to talk to those people. A good psychologist is gonna dig into that and try to get as much information to get a complete picture. The other thing is, you’re the one in charge of this appointment, and I know it seems like you’re in a doctor’s appointment. The doctor is the one who’s you know, leading the way but I really hope to dismantle that myself like this is your appointment your questions need to be answered. If you come in with bullet points and you’re like I want to go through this first then by all means, like this is your appointment and your time and of course we need to structure it in a certain way that we get all the information we need. But coming in prepared with like a list of bullet points or questions right off the bat and making sure the clinician knows that so that there’s time and we allocate time to answering yours is really, really helpful and important. Okay, Laura Petix 22:06 that’s that’s really good. When the parents when you’re doing the debrief with the parents, I’m sure so if it’s like the parents that I’ve spoken to and even myself, sometimes we leave those appointments, feeling either underwhelmed From what we heard or feeling achy about things that we’re learning or the way that they speak about our child and have to highlight some of the negatives, or we leave with more questions than when we first got there. So skipping forward to the end of the eval process when you’re saying okay, mom and dad or mom and mom and parents, here we go sitting in front of us. Here’s what my findings tell us. How can you What tips would you give parents before they get to that process to so that they can protect their own regulation? And go into it more? With a just knowing what to expect, I guess? Yeah, yeah, that’s a Speaker 1 23:11 great question. It you know, I think that the first answer to this question actually leads us back to the beginning again, when you are going through, looking for somebody who is going to do this evaluation for you. Sometimes it’s powerless because you’re you’re the referral is put in, you’re just placed with who you’re placed with and that’s what you get. If you have the autonomy, because your hands are not bound by you know, what, what gets put in or your schedule or whatever it is, if you have the ability to vet, the person who’s doing your valuation, you can look at them online. Most of us have profiles, either associated with our clinics or hospitals or on psychology today. Do a little digging, making sure that and I assume that people you know, parents listening to this podcast are going to be a very attuned for the right keywords for what comes next and and who I want working with my child. Because it’s a relationship we build. Making sure at the outset as much as you’re able to that this person is the right fit for you. And I understand that that can’t always be the case, especially in the medical model. But you always have the right to request somebody new. Always even if you’re in the middle of it, okay, you don’t have to go through it if you’re not happy to be with that person. That’s good. Yes, I think it’s important and all along the way too. It’s important to know that you don’t have to sit with any service or intervention that you are not happy with. But in terms of the feedback session itself, if you’re in it, you’ve already gone through it, you’ve had it the person or you didn’t because you couldn’t whatever it is a couple things. A lot of what we’re changing is especially in the medical system is giving information and then you guys go forth and use it. We are not trained in bedside manner. And so I know that there is a lot of concern. Patients that I’ve seen who have come in and said like, you know, my previous son’s evaluation at another clinic, they like didn’t even listen, they didn’t ask any questions they I had this with with a trainee of mine, too, who came in and said, Oh, they just talked about the previous of evaluation for a brother and you know, it was horrible because they basically just listed the three things that they need to do going forward but they didn’t take any time to adjust the parents needs the emotional roller coaster that it is to receive a diagnosis. I am very sensitive to that. Because, you know I because of the clients that I work with, I tend to work with you know, a lower SES demographic and under resource group and I know that just getting here was hard. But I know that a lot of clinicians also just need to meet productivity and move on. And so it can be really hard for us to stop and pause and be like there’s a human in front of us. And we need to adjust our human concerns. So reminding us of that too, although it shouldn’t be your job, but being like we are flying through these recommendations and like I just need to say like this is a lot this is overwhelming, should help recenter that person in front of you if they are going on and on and on. Alternatively, in the feedback, if a clinician talks or brings up a therapy that you’re not interested in, you cannot and leave and not take that intervention. It is okay. These are recommendations that are they are just that they are never mandates, even medication. There are recommendations, so you never have to do anything that doesn’t feel right. I would also urge you to ask that person like that doesn’t sit right with me like what else do you got? Right. We should have other tools up our sleeve. Laura Petix 26:58 Yes. That’s that’s the important pieces that parents leaving these sessions feel overwhelmed and then a list of everything from accommodations to changes in diets changes in schedules to adding therapies to school things and yes, they went into it wanting like a plan of what to do, but also it’s very overwhelming to have it all sit on you and that one day so I often try to help parents prioritize and sift through that based on what their what their needs are. So that’s really helpful. Since you already touched on I think this is really important part of the conversation to spend time on is that we keep referencing this as the medical model, which comes with it the DSM, and of course for those people who are new to this, in contrast to the medical model in terms of neurodiversity is the social model of disability and how it really relates to the context of the environments and the society that we live in and the infrastructure and the institutional norms and things like that and how that differs from this set of essentially neuro normative standards that were studied that were created by white cisgendered men, if I could be so blunt. So there’s a lot of issues that this that this brings, and it has come more to light. We are in 2024 but this is still very much the system that we are working within even though we constantly say the system is broken, the system is broken. So I want to ask you if you can tease that apart for us it you have such a unique perspective that you are neurodiverse affirming and every sense of the word when I hear you talk about kids and talk about the clients that you support, yet you have to navigate and be part of this medical model. How does that How do you do that? And what can parents look out for? Speaker 1 28:56 It is not easy sometimes. And there’s so much in your question, and I promise listeners at the beginning I would define what the DSM was to just so people know what the heck we’re talking about. Okay, so the DSM is it’s what it stands for is the diagnostic and statistical manual of mental disorders. And as you can tell from the title, it’s not exactly neuro affirming language from the outset. So the manual is used to classify people based on their cluster of symptoms. It’s been through many revisions and many updates throughout the years and the latest edition, the DSM five came out in 2013. And then there were like little tweaks made to it and 2022 I think many clinicians have a love hate with the DSM. So there has been a history of pharmaceutical influence on revisions. Definitely heavy cultural biases that you talked about. pathologizing What are just shared human experiences and potentially most concerning sometimes for some diagnoses? A lack of scientific basis. So we talk about something I don’t know if this is getting too technical, but we talk about called inter inter rater reliability for some diagnoses. So it’s like two people are observing the same phenomenon basically, are we going to come to the same conclusion we call it the Kappa. So it’s the measure that occurs beyond chance that there would be agreement between two Raiders or more so like, a C ADHD dementia, neurocognitive disorder, those Kappas are really good. So most people will agree that like we’re looking at the same thing. We’re good, but for some like personality disorders, it’s really low, like by chance that two people would agree and so that’s a problem. So it’s not to say that the DSM is worthless. I think that there is a lot of benefit to clustering, like shared human experiences that differ from the norm, so that we can come up with things like anxiety medications, right or therapies for depression. And the latest DSM is really trying to move more into the like advancements and neuroscience realm and to align with the International kind of version of this for medical models called ICD. And there are like DSM tasks force task forces and work groups that kind of like pour through the literature and conduct research on these groups to try to make sure that there is a scientific basis so it’s not just like a hodgepodge advantages to something like a DSM is that they’re standardization. So we’re all talking about the same group of people. We’re all using a common language insurance companies. Like that, too. And then we can study those things like what works with this kind of person and what works with this kind of person. And then there are the sort of the downsides so that you know, we have, like I said, pathologizing shared human experiences. There are disorders that have been in there, like hysteria, or homosexuality, which was included in the first edition of the DSM is the disorder. And then we develop things like conversion therapies, which we still use today to try to target that problem. Right. And the language in the DSM is problematic. I mean, it’s all deficits based. And I think it’s possible to highlight what is idiosyncratic or hard without making it based in the deficit. And some people are not bothered by it, you know, just give me something to help. I don’t care what you call it, but for others, and most people, especially those who form an identity around the label, it’s very important. Yeah, yeah. I have more to say on that. But I feel like I’m talking a lot. Laura Petix 32:33 No, no, no, I’m like listening to it. Because you’re always so eloquent when you talk about these things. I love hearing you talk about that. So yeah, so parents, so what I want parents to understand because a lot of and I’ve done episodes on this and you and I talked about this all the time that the label and what that means what it doesn’t mean and the the I generally see any sort of label as long as you can properly and confidently identify with a no that comes with that can be such a benefit to identity to community to validation, all of those things, but like you said, when we’re thinking of label as meaning a specific diagnosis, a lot of us just automatically think disorder or something wrong. We have to fix them. And I tried to tell parents that it’s kind of like, it’s this game. We have to play with the system to get our kids where we need so we kind of have to compartmentalize and know, okay, the file says this says disorder has this thing. It triggers me when I see it. And yet I know that has led us to this neurodiverse affirming provider who knows that they need to play this game at the chart with insurance but they are wholeheartedly neurodiverse affirming provider, they are treating my child like a respectful human being they’re not training them there. So it’s it’s kind of like we have to take that without that without a replacement system, and still dealing within the insurance for parents to be able to access certain services. We kind of have to play that game, which is really a hard spot to be in. You Speaker 1 34:05 know, and it goes back to what you were saying about the medical model of disability versus the social model of disability. I really think this is why we’re in this conundrum to begin with. Right? So the medical model of disability is that the person is the deficiency the person is the defect, right? There are problems with us and that’s how the whole DSM is framed is that like these are the disorders these are the deficiencies and it makes sense to not want to be associated with a label where you are a defect or deficient right and I completely understand that. I am seeing a shift in younger generations towards seeking the label and and identifying with it and just being a very important part of identity is the label and I am in full support of that. And I think it is because we are moving in medical, medical, like institutions are moving a lot slower than everywhere else. But the social model of disability instead puts forth that the disability is the structure right are the attitudes around you? It’s not the person so like inaccessibility of the building or like insufficient supports in school or no sign language interpreters are like, and I’ve said it before, on another podcast, which is many of the symptoms that we’re seeing in the DSM become disabilities in an ableist or inaccessible world, but on their own. You know, they are not necessarily disabilities but they are in the world that we have and therefore we need to do something about them and accommodate them. And that’s really important. So no matter whether they’re subjective or objectively hard, some I would argue are objectively hard. Everything needs support, and that is not the person’s individual responsibility. It’s the systems to change. Laura Petix 35:51 Yeah. And so when parents then are at this point of receiving a diagnosis and a referral to therapies and you mentioned, so you don’t have to take if they say you have to go to ABA for this many hours or you have to do this therapy for this many hours and something about that doesn’t sit right with you. It doesn’t feel sustainable to you. What are other suggestions you would give parents if they’re walking away with a clear set of needs a clear set of quote deficiencies or areas of improvement that have led to a certain diagnosis yet? They are they the the therapy they’re being recommended is not an option for them for one reason or another like what what would you suggest them to start with or what to do from there? Speaker 1 36:39 Great question. And it’s a tricky answer, because the presentation is going to determine the answer but I’ll take an example and we can walk through it. So say like your four year old or something was diagnosed with autism. So the first line of recommended therapy for that four year old is probably going to be a combination of ABA, and speech therapy and occupational therapy, or something like that. And I know and maybe like special needs preschool and I know that for many people ABA doesn’t conjure up an image of a neurodiversity affirming intervention, and I get that and I’ve been there and I also want to plug that I do know some BCBAs who are committed through shaping that narrative and that ABA is trying to move in a more developmental direction, but I still understand the concerns wholeheartedly. And the other issue is this is that insurance needs a diagnosis to cover services. So without the diagnosis, you’re paying out of pocket and even with a diagnosis, there going to be limits on what kinds and amounts of interventions that you can even access. So some parents might really want to send their kids to a dir floor time provider and not be able to pay $150 per session because it’s not covered by insurance. So sometimes your hands are tied by what insurance will cover. And that’s an unfortunate reality of people who just cannot pay out of pocket which is the majority of this country. Some ways around it though. OT in the medical system, for example, they tend to have shorter waitlist than other introductory speech therapy tends to be a very long waitlist to OT tends to be a little bit shorter. And I truly think and I know speaking to the right person about this, that OT is such an invaluable tool. People when I present it often think of it as just like a fine motor targeted therapy. But I think that the sensory and emotion regulation tools tend to be so helpful. So I really want to plug it ot I love Laura Petix 38:25 I love when OT is plugged and though I will put my caveat here. I have a gripe with OTS in the medical model because they do tend to focus more on self care tasks toileting feeding, which is very needed but a lot of the clients that were supporting have more of the nervous system regulation needs, which I don’t know if this is coming from the insurance but insurance less covers those. And so then the medical model OTS are not getting reimbursed for insurance on those things. So they don’t provide those kinds of support. So it’s this big circle so yes to OT, but don’t be surprised if your hospital based ot isn’t as well versed and sensory or nervous system stuff. Speaker 1 39:15 That basically like a way around it sometimes sometimes is to ask the medical provider for an OT referral that you can take outside of the hospital and sometimes if it’s placed within the hospital for an external placement with like another, another provider, you can have better luck and I agree with you in my referrals when I when I asked the nurse on my team or something to place an OT referral typically, I’ll say please add the caveat of working on emotion regulation skills and put Asterix next to that. And I don’t know ultimately what the percentages of OTS on a medical system that are going to focus more on adaptive skills or fine motor versus emotion regulation. But I’m inclined to agree with you that it’s probably not the statistic that I would be looking for. Laura Petix 40:03 But I’ll let you get back. Sorry, I Yeah. So you were saying that you tend to recommend OT and speech. Yeah OTS Speaker 1 40:11 one and again, like there’s so many recommendations out there depending on what it is that your child needs and what they’re coming in for like if they’re coming in for dyslexia, then this whole conversation is you know, is not in line with what you need. You’re going to need something like the Orton Gillingham curriculum in the school which is kind of like the gold standard dyslexia rehabilitation program, I suppose to help kids learn how to read and and phonological processing appropriately things like that. But generally, like you don’t have to pursue interventions that don’t align with your value system. And you can shop around one ABA center might be very distinct from another like one clinician who is by the book and uses external reinforcers like m&ms that does not vibe with you might not be a good fit, but there might be another who listens to your values uses high fives and like prioritizes social reciprocity over eye contact that might be a better fit for you. And you can and it’s covered by insurance right and so you can like finagle the system by shopping around using the same referral for the same service but just making sure that you talk to the provider ahead of time about like this does not work like I will not ignore my child was having a bad time, a hard time and I expect you to do the same and a clinician is going to be like sounds great. You know, and finding the right fit is famously like one of the best predictors for success in therapy. Laura Petix 41:35 Amen. That’s the same for classrooms as well. The classroom is best I say this, this, this and this. However, the teacher is the one that makes the difference Speaker 1 41:47 on jacks that and you know, some kids might not even need formal interventions, but maybe the parents need support right? And so pursuing like parent coaching options might be another route or there may be executive functioning coaches out there outpatient therapist that can give you some skills that you can then apply 24/7 And that might be enough to but it all really depends. But yeah, hopefully those are some. Those are really Laura Petix 42:13 great places to start. So my last question for you is how often does this happen? And then what do you recommend for it when parents disagree with a finding or they expect a certain diagnosis or they didn’t expect a certain diagnosis and they’re wanting to question it or get a second opinion? What does that process look like? Speaker 1 42:37 This is the hardest part of my job, I think is when I have done all this work and you know, these are objective categories that are maneuvered by a subjective lens. So I understand that it is not like blood test or litmus test for a lot of plenty of you. disorders are diagnoses categories. And so it can be complicated and when you are expecting an outcome, you don’t get it. It can be devastating because one you have either been denied services or to your conceptualization of your child has just been challenged. And so hopefully there has been some communication along the way. If they’re if you like, you know that there’s going to be a big shift. In expectation the clinician has reached out to you but if they have not, and you’re just kind of stuck in limbo. Like explore that with the clinician, ask your questions, ask the follow up like why is this not aligning? What is it that surprising? Try to dig into it with them. And if you go into that feedback session prepared for the alternate response not necessarily agreeing with it but prepared for the prepared for it with you know your list of questions like imagine ahead of time before you go into that appointment. They say actually, no, this is not autism, then go and say well, what is this hand flapping? Or why aren’t they playing with other kids? Have those questions ready? If you are not feeling it, you’re like this answer is not sufficient. By all means. By all means, get another evaluation. And you can ask your primary care but I know that for like my population, in particular, that’s either a year long waitlist or they’re paying $5,000 out of pocket for an evaluation into private practice and for some that is in impossibility. Like that’s got to be rough. Yeah, I know. I know how hard that is. However, when another option is you can ask that clinician like sometimes. I haven’t. Luckily been asked to do this too many times. But you can always ask that clinician to do like a follow up evaluation in six months. And see like either with you or with somebody else and see if they would get different answers or see if their development has changed in some way if they’ve gained skill or loss skill or whatever. We can do a reevaluation because you’re already connected to that clinician. So you might be able to get in that way too. But I know how hard this is. That’s the hardest part. Laura Petix 45:02 Oh, well, thank you so much for all your tips and talking parents through this process. I know parents who are at this beginning of this process, feel very overwhelmed and don’t know what to expect, which just creates so many more questions and anxiety about preparing for this. So thank you for arming parents with the tools and the words and the advocacy tools for moving forward. Speaker 1 45:24 Thank you, Laura. I hope it was helpful. Very, Laura Petix 45:27 very helpful. So I know you recently started your own social media and all the things that you share are just the wonderful tips that I see you share. In the community. So I’m so glad that it’s now more on this public platform for everyone to see. I know it’s new. So I want you to share all about it and what your plan is with that page on Instagram. I know that’s where it’s starting. Let us know where to find you and some of the things that they can expect to see if they choose to follow you. Yeah, Speaker 1 45:54 I would love new followers. My only goal with my Instagram page is to put out free accessible information that I would give to parents in my office who don’t have access to me because of wait times or money. That’s really it. I want it to be evidence based. I want it to be strength I tried to cite my sources, and be neurodiversity affirming in my language as much as I can. I’ve already been connected corrected on using like the puzzle piece image for example. And so you will never see that again. And so if you ever see anything that doesn’t align, I am completely amenable to feedback and I’m also going to be putting together a list of neurodiversity affirming sites and books and organizations that will be on there for people to access as well. For more Laura Petix 46:35 information, my God, that is so so needed, and I love that you are open to unlearning some of the things about the neurodiversity movement, which I’m still learning to this day. I feel so much stronger. in it than I was a few years ago. But it’s definitely a humbling process and you need to be willing to just take it and say you’re right. Okay, and not question it. Because at first it’s very ingrained in the things that we learn and it feels very familiar, but we’re definitely on this process together. So it’s I’m so excited to see all of those posts and all of that content. Thank you so much for being here today. Alex. Unknown Speaker 47:10 Thank you Laura. It’s such a pleasure.




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Laura Petix, MS OTR/L

I’m an enneagram 6, so my brain is constantly moving. My OT lenses never turn off and I can’t “un-see” the sensory and other developmental skills that go in to literally every activity. I love taking what I see and breaking it down into simple terms so parents can understand what goes into their child’s behavior and skills.

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