Autism, Spectrum Disorders, Their Relationship with Social Security Disability, and More with Guest Nicole Clark

Welcome to Season 1, Episode 14 of Winning Isn't Easy: Navigating Your Social Security Disability Claim. In this episode, we'll dive into the complicated topic of "Autism, Spectrum Disorders, Their Relationship with Social Security Disability, and More with Guest Nicole Clark."

Join host Nancy L. Cavey, an experienced disability attorney, for a special edition episode exploring autism and spectrum disorders - and how these diagnoses intersect with Social Security Disability benefits. We’ll get to know our guest, Nicole Clark, and the important work she does, delve into the nuances of autism and related conditions, and walk through a real-life case to highlight some challenges applicants with autism spectrum disorders often face. If you or someone you love is navigating the disability claims process with an autism diagnosis, this episode is packed with insights you won’t want to miss.

In this episode, we'll cover the following topics:

One - Introducing Nicole Clark

Two - Understanding Autism and Spectrum Disorders

Three - Social Security Disability, Autism, and Spectrum Disorders

Whether you're a claimant, or simply seeking valuable insights into the disability claims landscape, this episode provides essential guidance to help you succeed in your journey. Don't miss it.


Listen to Our Sister Podcast:

We have a sister podcast - Winning Isn't Easy: Long-Term Disability ERISA Claims. Give it a listen: https://wiedisabilitypodcast.buzzsprout.com


Resources Mentioned In This Episode:

LINK TO YOUR RIGHTS TO SOCIAL SECURITY DISABILITY: https://mailchi.mp/caveylaw/your-rights-to-social-security-disability-benefits

FREE CONSULT LINK: https://caveylaw.com/contact-us/


Need Help Today?:

Need help with your Social Security Disability claim? Have questions? Please feel welcome to reach out to use for a FREE consultation. Just mention you listened to our podcast.

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Please remember that the content shared is for informational purposes only, and should not replace personalized legal advice or guidance from qualified professionals.

Transcript

Nancy Cavey [00:00:18]:
 Hey, I'm Nancy Cavey. Welcome back to this episode of Winning Isn't Easy, the Social Security disability benefit segment. In this podcast, we break down everything you need to know about navigating the Social Security disability system. And I'm your host, Nancy Cavey. Before we get started, because I'm a lawyer, I have to give you a legal disclaimer. This podcast is not legal advice. The Florida Bar association says I have to say that. And now that I've said that, nothing will ever prevent me from giving you an easy to understand overview of the Social Security disability claims process and the games that are played during that process and what you need to know to get the Social Security disability benefits you deserve.
 
 Nancy Cavey [00:00:59]:
 So off we go. Now this is a special episode because this month is Autism Awareness Month and we're going to be exploring autism and spectrum disorders, specifically those diagnoses that intersect with Social Security disability benefits. And we're going to get to know our special guest, Nicole Clark, and the important work that she does, going to delve into the nuances of autism and related conditions. And we're going to walk ourselves through a real life case that's going to highlight the common challenges of autism and spectrum disorder cases. So today we're going to talk about three things. One, we're going to talk to Nicole about herself and what brings her to this special work. Two, we're going to talk about understanding autism and spectrum disorders. And three, we're going to talk about Social Security disability, autism and spectrum disorders.
 
 Nancy Cavey [00:01:49]:
 Now, Nicole has assured me that she knows nothing about Social Security disability. And I said, that's fine. I'm going to talk, but I'm going to be posing questions to you to get your thoughts from your perspective. So let's take a quick break before we get going.
 
 Speaker B [00:02:06]:
 Are you considering filing for Social Security disability or has your claim been denied already? Either way, you require a copy of your rights to Social Security disability benefits, which will cover everything you need to know about the Social Security disability claims process. Request your free copy of the book@kvlaw.com today.
 
 Nancy Cavey [00:02:32]:
 Welcome back to Winning Isn't Easy with our special guest, Nicole Clark. Nicole, I know that you served in the Navy. My father was a pilot during World War II. And so that is a special bond that I think that we have. But I also know that you've become a board certified psychiatric nurse and you've got 18 years of experience and I think it was that experience and your personal experience that led you to start the adult and psychiatric facility that you are working with. Can you tell us a little bit more about yourself and that, that organization and facility?
 
 Nicole Clark [00:03:13]:
 Yeah. Hi Nancy, thank you for letting me come on your podcast and to share a little bit about autism, a disability that is very near and dear to my heart. And hopefully your listeners will get to learn why with your legal disclaimer. I'm going to give my own legal disclaimer here. You triggered my, you know, my brain. I'm learning from you. Anything that I say in this podcast is not meant to be medical advice, nor is it meant to supersede the medical advice of your that disclaimer. With that being now we've got our disclaimers out of the way.
 
 Nicole Clark [00:03:49]:
 There we go. Now we can talk. Our conflict of interest slide is out of the way. So. Yeah, so I'm a Navy veteran. I went into the military as a hospital corpsman in the Navy when I was 17. My parents had to sign away my rights because I was not old enough to sign them away myself. And I went over to San Diego.
 
 Nicole Clark [00:04:09]:
 I was in for five and a half years. I did a year at the Naval Hospital in Balboa. I did a year at the Marine Corps Air Station and then I did three and a half years on USS Nimitz, which is an aircraft carrier. I did three deployments overseas in those three and a half years. My feet almost never touched shore, touched land. And I fell in love with medicine even more so. And so one of the things that I specialized in a lot in the military was trauma medicine and a lot of adult trauma medicine. And then I also started to touch into psych medicine.
 
 Nicole Clark [00:04:45]:
 And when I got out of the military, I always like to say I didn't know what I wanted to be when I grew up. And so I went to a lot of different educational courses and I got a bachelor's in psychology and then did a master's in mental health counseling. Got almost through that program, realized the accreditation wasn't going to allow me to work at the VA hospital, which is I really wanted to work with veterans. So I withdrew from that program my last semester, went back to school, got a second bachelor's in nursing through a grant funded program for medic to nurse, and then went into a DNP program as a psych nurse practitioner. Realized I don't really want to just work within the healthcare system, I want to change the healthcare system. And so I stopped that program, went back to school again and ended up getting a master's in nursing administration and leadership. And I started working in high level nursing leadership roles and Acute care hospitals and psychiatric hospitals, and primarily with adult psychiatry and then trauma medicine as an ER nurse as well. When my children were going through some of their struggles, and we can get into that, that's when I sort of changed a little bit of my trajectory.
 
 Nicole Clark [00:05:58]:
 It changed my life when I started to go through these lived experiences of mental health struggles with my own children and trying to navigate the special needs world and disability world with my own children. And ultimately it led us to. Led me to meeting my partner, Dr. Marielle Perel Morales. Her name is kind of a mouthful, so we lovingly call her Dr. P. And she is a child, adolescent and adult psychiatrist who is trained in Columbia University. And just the most brilliant woman.
 
 Nicole Clark [00:06:30]:
 And her and I got together, we had the same huge ambitions of changing the healthcare system. And we created the adult in pediatric.
 
 Nancy Cavey [00:06:39]:
 What is the function of the institute and where is it located?
 
 Nicole Clark [00:06:45]:
 Yeah, so our function is we're a comprehensive psychiatric practice and we kind of do even more than a lot of psychiatric practices do in that we specialize in autism. That's one of the things that we specialize in, in autism evaluations. We also do traditional medication management. We might see an 18 month old on Monday for an autism evaluation. We might see a 42 year old on Tuesday that has bipolar. I really wanted to be able to spread our wings and help a broader population and be able to help anyone within the mental health. We're merging. We're one of the first of its kind to fully merge mental and behavioral health aspects across the lifespan.
 
 Nicole Clark [00:07:28]:
 So we work with a lot of great providers and we collaborate with a lot of different organizations, but we see clients. We are primarily located in Florida on the Treasure Coast. Our main clinic is in Stuart. We have a clinic in downtown West Palm, but we do a lot of telehealth and we see clients all over the country. Clients will fly their kids in to come and see Dr. P because she's that amazing.
 
 Nancy Cavey [00:07:55]:
 Wow.
 
 Nicole Clark [00:07:58]:
 We're also licensed in Virginia, though. I always forget to say that. So we are licensed in Virginia as well. And so we can see clients in Virginia without them having to fly to Florida.
 
 Nancy Cavey [00:08:09]:
 So before we jump into autism and Social Security disability claims, let's take a quick break. Okay.
 
 Nicole Clark [00:08:19]:
 Okay.
 
 Nancy Cavey [00:08:39]:
 Welcome back to Winning Isn't Easy. Now, Nicole, let's talk about autism and spectrum disorders. Unfortunately, in today's politicized environment, I think there's a lot of misunderstanding about what autism is and autism spectrum type disorders. So can you give us an overview, please?
 
 Nicole Clark [00:09:04]:
 Absolutely. So I am a certified autism specialist through the IBCCEs, I'm also a certified ADOS evaluator. And so I've had to do a lot of additional education. Like I said, it was a personal attachment. Both of my daughters, 12 and 8 year old now, they were diagnosed with autism. My younger daughter also has dyslexia and so she has a learning disability. And so I dove into this field because I realized that there's not a ton of providers that are really comfortable with autism. They tend to feel like it's outside their scope.
 
 Nicole Clark [00:09:35]:
 And so parents fall into this never ending loop. There's also a whole lot of myths out there about what autism is and is not. There was a big change in 2013. The DSM 5 was released. The DSM. And for those of you that don't know. Yes, I'm sorry. We get on a track as a clinician working in healthcare where we just automatically assume everyone understands the acronyms that we use.
 
 Nicole Clark [00:10:03]:
 So the DSM 5 is the diagnostic Statistical Manual for Mental Health Disorders. So it's essentially our manual of how mental health disorders are diagnosed, what criteria someone needs to meet in order to be diagnosed with a mental health disorder. In the DSM 4 we had autism or autistic disorder and we had Asperger's. The DSM 5 came out and they recognize that there's a lot of other disorders that they all kind of fall under that. Autism, specifically spectrum disorder. So now it's one disorder and everything sort of falls under it. So you have pervasive developmental disorder, will now fall under that. Autism spectrum disorder.
 
 Nicole Clark [00:10:45]:
 You have a lot of the more global developmental disorders and some of the catch all disorders that if a provider was like not really sure what this is, you know, sensory processing disorder, Asperger's, all of that sort of went away. And it now all falls under the autism spectrum disorder. And so it's a spectrum. And we recognize with the DSM 5 that a child can fall or an adult can fall anywhere on that spectrum. And there are specific criteria for that diagnosis. And I'm going to reference my notes so that I don't screw this up for anyone. But the criteria is persistent deficits in social communication, social interaction across multiple, multiple context. So that might be.
 
 Nicole Clark [00:11:34]:
 I use my girls as an example frequently because it's not a HIPAA violation, it's my kids and they consent to this. So they fall on very different ends of the spectrum. So my older one, her social impairment is, she hates large crowds, she will not talk if there's a lot of people. She is very Aware her anxiety levels go through the roof when there's a lot of people. She really struggles to function. As she gets older, it gets a little bit eas. My younger one is the opposite. We always say it's her world.
 
 Nicole Clark [00:12:06]:
 We all just live in it because she is just. There's zero bubbles, there's zero acknowledgment that anyone else is living in the world around her. It's just she's going with it. You know, she can sometimes violate your personal space. She will sometimes go up and talk to people that maybe she shouldn't be talking to, things like that. And so that social communication is a big one with adults. A lot of adults that realize maybe they had been misdiagnosed as a child or they are just now realizing, oh, maybe this is autism. A lot of their symptoms that they're seeing with that social deficit is they've always struggled with reciprocal communication, that back and forth chitchat.
 
 Nicole Clark [00:12:53]:
 They've always struggled to keep the conversation going. They've struggled to what are appropriate questions to ask people in a conversation. They don't do a whole lot of small talk and chit chat. And so that's a different area of the spectrum. They still kind of fall under that spectrum. Another criteria that must be met is restricted and repetitive patterns of behavior, interests or activities. So what that looks like is your stimming. So stimming is kind of a shorthand term for self stimulation.
 
 Nicole Clark [00:13:30]:
 It is a way for people with autism to regulate their emotions. And so that stimming in a little kid might look like arm flapping or it might look like mouth posturing or hand posturing. There's also auditory or verbal stimming that verbal stimming might be grunting or making certain sounds. It almost looks like a tic. The difference, the way that it was explained to me by a top researcher at Johns Hopkins, the difference between a tick and a stim is a stim you can interrupt. If you draw attention to a stim, it tends to stop. If it's a tick, you cannot interrupt it. You will not stop a tick, regardless of what's going on.
 
 Nicole Clark [00:14:12]:
 Another restricted behavior is they become very fixated on a specific topic. All they want to talk about is dinosaurs. And it doesn't matter how many times you lead them away from dinosaurs, they are going to find a way to go back to dinosaurs. And they will tell you every dinosaur under the sun. And they're very rigid in their routines and the topics and what they like and what they don't like. And I Think for layman's terms, the. The way that I'm able to kind of explain, explain an autistic brain is it's just a different way of processing external stimuli. It's a different way of processing information in their environment.
 
 Nicole Clark [00:14:54]:
 And their brain is very black and white. There's not a ton of gray area in the autism world. So either it is or it isn't. You know, my youngest, it's, honey, why did you punch Johnny in the face? And she never did this. But a great example I give to parents that it really makes sense for them. Why do you punch Johnny in the face? Well, Johnny took my pen. I punched him in the face. He gave me my pen back.
 
 Nicole Clark [00:15:18]:
 Okay, well, that's wrong. You can't punch Johnny in the face. Why not? It got the mission accomplished. It's very black and white. Right. Punch him in the face. I got my pen back. I wanted my pen back.
 
 Nicole Clark [00:15:29]:
 And so there's a lot of struggles in the social environment and a lot of crossover. The other aspect with a diagnosis is it needs to be present during the early developmental period. So autism is a neurodevelopmental disorder. There are other neurodevelopmental disorders such as ADHD and other things that children are born with. So that's a common myth is that autism is caused in the postnatal period. It is not. There has been a ton of research to support that. Autism is not caused post, meaning after natal, meaning birth.
 
 Nicole Clark [00:16:04]:
 We think it's likely caused during the first trimester in a genetic mutation of some sort. Why is it caused? We don't really know. That's what we're trying to figure out. And that's what some people think we are going to figure out real quick. But without stepping into that politically. Right. We don't really know why it's caused. We want to keep asking why, but it's definitely not caused after the child is born because of vaccine that has been disproven too many times for us to continue to have that conversation.
 
 Nicole Clark [00:16:37]:
 I'll go ahead and put that out there right now. It's during development, in utero, and the symptoms need to be clinically significant and cause impairment in their life. That's kind of a catch all with most mental health disorders. And that's an important.
 
 Nancy Cavey [00:16:55]:
 So I'm going to stop you right there because that's always an issue in the context of a Social Security case. Significant impairment and dysfunction. I talk to my clients a lot about symptoms and functionality, and what you just said sounds to me like the same thing. So in the context of autism, can you give us some examples of this dysfunction, if you will, and then functionality?
 
 Nicole Clark [00:17:24]:
 Yeah, absolutely. And I, I, I completely agree with you, Nancy. That is such an important piece. And the problem that I have is there are people that are in some powerful positions, right? Maybe it's a judge, maybe it's someone reviewing your Social Security case, your disability case. They're put into this powerful position, but they're not fully educated on mental health disorders or autism in itself. And so they're making these determinations based off of very, very subjective and opinionated biases. So when we're talking about significant impairment, it is really important to look at the individual. What I might feel is a significant impairment in my life, you may not see that as a significant impairment in your life.
 
 Nicole Clark [00:18:18]:
 Maybe you found ways to cope with that. And so we really have to do what we, we like this term in my field of meet the client, where they're at, find out what is their life, what do they see as an issue. And so my older daughter not being able to really talk to her peers very much or very effectively, for her, that is a significant impairment. Her anxiety levels go up, there is a higher potential for self harming stimulation where she'll kind of bite her stimming right now as she bites the skin off of her fingers to the point where they become infected. So that is a significant impairment for her. For my younger daughter, she could care less whether she's talking to her peers or not. So the fact that she cannot hold maybe a socially appropriate conversation with her peers, for her, she doesn't care, that's not a significant impairment to her. And so we really have to look at these when we're, when we're looking at them from a clinical perspective, it is so important to look at it from the individual's viewpoint.
 
 Nicole Clark [00:19:33]:
 Because let's say maybe in a textbook and sitting on some judge's desk, they look at something a symptom of autism or a functional impairment of autism, and they say, well that's not clinic, that's not a significant impairment, right? Oh, you can't talk to peers, that's not a significant impairment. Why should we give you disability? What they're not looking at is not only can they not talk to peers, but if they're put into an environment of needing to talk to peers or there is a lot of people around them, they start headbanging and they're cracking their head on the wall and they have repeated TBIs and concussions or they're cutting themselves. And I, you know, obviously some of what I'm going to talk about today is a trigger warning for those. And I should have said that beforehand, but I think that these are really important topics that we need to be talking about because this is someone's reality, this is their life that we're talking about. And if we're too afraid to talk about these topics and what this means for this individual, we're never going to get justice for them or we're never going to allow them to access the services that they need to become a productive member of society. Instead, we're just going to continue to sweep it under the rug and not really talk about it. And that's not okay, Maya. We have to talk about these things.
 
 Nancy Cavey [00:20:53]:
 And so it's really important we'll talk about that more. But what are the treatment, therapeutic methodologies or even accessibility challenges for folks who have autism or in the spectrum disorder?
 
 Nicole Clark [00:21:13]:
 So there's a lot of different treatments out there. What works for one person might not work for another. And so we always tell families, find what works for your kids. You know your kid and you know yourself better than anyone else is ever going to know you don't ever let someone gaslight you into thinking that they know more about you or your child than you do. You're with them day to day. That is your child. You have a voice in this. So there's no real cookie cutter.
 
 Nicole Clark [00:21:36]:
 There's a couple gold standard therapies. So ABA therapy is one of them. It's applied behavior analysis therapy. It's been around since B.F. skinner kind of created operant conditioning back in the 80s. It's a little bit more infant in its infant stages of becoming a more formal therapeutic modality. More talked about, but we're getting there with ABA therapy. That's the gold standard with autism.
 
 Nicole Clark [00:22:00]:
 We also know ABA therapy works great for kids with ADHD with other disorders. Unfortunately, insurance isn't going to approve it for almost anything but autism. Especially now with Medicaid issues and OCA rules changing, it's kind of difficult to get approved for ABA therapy. And it tends to be really long wait list. There's not enough providers. Another great therapy modality for kids with autism is occupational therapy. Speech language pathology. They're amazing and they do so much more than what most people think they do.
 
 Nicole Clark [00:22:36]:
 Occupational therapy for a kid with autism is they're going to help them understand nonverbal communication. They're going to help them understand how to fit within their society, within their world, how to make sure that life is safe for them. Speech, same thing. Speech is amazing for people with autism. And they can work on a lot of the same goals that OT is going to work on and a lot of the same goals that ABA is going to work on. They can help them better understand again, non verbal communication, things like that. We find it is most effective when all of the different therapies are working together, when they're working towards the same goals. You know, a psychiatrist, maybe we need to talk about medication.
 
 Nicole Clark [00:23:21]:
 If a child with autism, their anxiety level is at a 10, none of the therapy is going to work until we can get them down to a 6. Let's bring their level from a 10 to a 6. But therapy can now be more effective. There's also DBT therapy is great for kids with autism. That's dialectical behavioral therapy. And so it follows kind of a, I don't want to say a script, but for lack of better terms, a script of how that therapy is going to work and how each session is going to go and what goals they're going to work towards. There's a lot of different therapies out there that are fantastic. Unfortunately, the wait list for a lot of these therapies are through the roof.
 
 Nicole Clark [00:24:02]:
 The waitlist just to get an autism evaluation is unbelievable. And they can't get access to any therapies until they get this evaluation done. They also can't get access to APD system until they have an evaluation on agency for persons with disabilities. They can't get access to Social Security disability, they can't get access to med waiver programs, Medicaid waivers, income waiver programs until the evaluation is done. Yet the waitlist for evaluations, at least in Florida, is anywhere from nine months to two years. The waitlist in other areas of the country, New York, I've been told that is upwards of four years. Certain areas of Pennsylvania, New Hampshire. And so these families, their hands are tied and they're really struggling.
 
 Nicole Clark [00:24:51]:
 And then they're making the evaluation process more and more complicated because all of these therapy services and all of these resources, disability are costly. And so if we can make it really, really hard for a child to get a diagnosis, then we're able to kick back any approvals or authorizations for these expensive, costly services and save a whole lot of money. And the reality is how many people have, especially if they're getting Medicaid, have the ability to sue Medicaid? Yeah, right.
 
 Nancy Cavey [00:25:28]:
 Well, I've got lots of questions, but before we go there, let's take a break and Come back. All right.
 
 Speaker B [00:25:40]:
 Struggling with your Social Security disability case? The right attorney can make all the difference. Get our booklet the key to hiring a great attorney for your Social Security disability case. Discover how to find an experienced attorney who will fight for your rights and navigate the process with ease. Don't leave your future to chance. Request your future free copy@kvlaw.com today and ensure you have the expert support you deserve.
 
 Nancy Cavey [00:26:11]:
 Welcome back to Winning Isn't Easy and our special guest, Nicole. Nicole. I do not do children's Social Security work, so I'm not an expert in it. I do have an attorney that I refer my children's cases to, but obviously I deal with adults disability cases. And what I wanted to ask you were several things. Not every one of my clients comes to me with a diagnosis of autism, but I've been practicing law long enough to recognize the symptoms and the presentation, which normally comes in the form of difficulty maintaining or keeping employment. So when that happens, generally I'm kind of at a loss because I have to try to find somebody to make the diagnosis or I have to go back to providers to see if I can get them to specifically address the situation. You did mention that people have quote, unquote, sort of been misdiagnosed, and that's in quotes because of the change in the psychiatric manual's definition.
 
 Nancy Cavey [00:27:35]:
 What suggestions do you have in a situation where the person has not been, and I'm again in quotes, correctly diagnosed because of the change in the definition or, you know, I, as the lawyer suspect that there is something going on that hasn't been properly diagnosed. What do we do, if you will?
 
 Nicole Clark [00:27:54]:
 Absolutely. That's a really good question. And I get that question a lot, Nancy, of where do I go from here? And I think another reason why people are often misdiagnosed or not diagnosed at all is because of the stigma associated with the word autism. It is going down, thankfully, but it's still kind of there. And I like to use this quote that I happened to see on Facebook the other day. A woman posted it and she had said, I spent my whole life believing I was some sort of messed up horse, but come to find out I was a zebra. It was unfair that I was comparing myself to the other horses when in reality I've been a zebra all along. I love that we find that with adults that have autism, they have really struggled throughout their life.
 
 Nicole Clark [00:28:47]:
 When they come to us at the Adult and Pediatric Institute, we diagnose and we evaluate adults and we will give them the full report to help if they're needing work accommodations or they're needing Social Security disability because they can't hold gainful employment. And so what I tell them is make sure that you are advocating for yourself. There are some free resources online. Autism Speaks has a free self report adult evaluation questionnaire that they can fill out. Now, unfortunately, that's likely not going to be recognized by Social Security as a formal diagnosis, but it gives them a good starting point. And I want to say it's like a 50 to 60 question test that you would fill out online. Again, it's free and it'll tell you if there is a high suspicion of autism. And we, we do find that they really have a hard time holding down gainful employment because if we don't put a word to this, I hate the term label, but that's a reality.
 
 Nicole Clark [00:29:53]:
 We don't know what we're dealing with. How do we know how to treat it? If they aren't aware that there is autism, that there's an underlying autism spectrum disorder diagnosis there, they don't know what accommodations to ask for at work. Maybe even if they do get diagnosed, they might still not know what accommodations because they don't know what that means to them. They're still exploring that they've been trying to fit into a world when in reality the world needs to change to meet their needs so they can be.
 
 Nancy Cavey [00:30:27]:
 And yeah, so fitting into their needs sort of triggered something. And I apologize for interrupting you in the context of the Social Security system at step four of the evaluation process. The question is, can you go back to the lightest and simplest job you held in the five years before your claim was decided? And I always am first off looking at the medical records to see what is the diagnosis. Because if there isn't a diagnosis, and I suspect that they have features of or are on the spectrum disorder, there are many times when I actually am trying to get from the treating psychologist or psychiatrist a residual functional capacity form which addresses the person's functioning in terms of things like the ability to maintain concentration or pace, to deal with criticism in the workplace, to deal with the public, to deal with changes in the work setting. And there are times when I have to say, look, they might be autistic, they might be on the spectrum, but it's not really there. So I'm going to have to, in quotes, make this into an anxiety case or a depression case because of the lack of formal diagnoses. And that probably is appalling to a medical provider. But you know, the problems that I have with the adult type cases is either the lack of, generally it's the lack of diagnosis.
 
 Nancy Cavey [00:32:12]:
 And so I've got to sort of fudge my way into a condition in which I think I can at least get the Social Security administration to pay attention. Any thoughts about that?
 
 Nicole Clark [00:32:27]:
 Yeah, we see that a lot. We see that a lot. You know, the autism. One of the things that I talk about a lot is I'm not going to be able to cure your autism. We can't cure your autism. You will always have autism and you will always have certain periods of your life as you go through different developmental stages of your life throughout childhood, throughout adolescence, adulthood, that you may have regressions in different domains related to your autism. Maybe that's social, maybe that's self harming, maybe that's stimming behaviors or rigid, inflexible thought process. What tends to come along with that autism, especially when you have a person that is trying to fit in to the workforce, is extremely high levels of anxiety and depression.
 
 Nicole Clark [00:33:20]:
 And that might be generalized anxiety disorder, that might be social anxiety disorder, whatever it may be, whatever phobia that may be. And so I think when we're doing an autism evaluation, we're not just doing an autism evaluation, we're also doing a full psychiatric evaluation. Because if you're only just talking about the autism, or you're only just talking about the anxiety or just talking about the depression, you're not painting a whole picture of this person, all of the struggles that they're going through and then all of the potential struggles that they're going to go through in the future. When we're adding autism into the mix and we're adding that diagnosis into the mix, that can kind of prepare that individual for future struggles, that maybe they're not having it right now, or maybe their anxiety has been really well controlled lately. But they're more susceptible to ptsd, they're more susceptible to the trauma impact which is then going to re trigger severely maladaptive behaviors of self harm. Or they might become reclusive, right? They might stay in their home, they don't want to get out of their bed, they don't know how to function in society. They're not taking a shower anymore, they're not going to work. And that's not their fault, that's the system's fault.
 
 Nicole Clark [00:34:34]:
 Because the system does not create resources in place to support them as a unique individual. That if they have this come up, here's who I go to for help so that I can get past this, so that I can process this Trauma, I can process what happened and return to a healthy functioning level. So we don't have those systems in place and we're expecting them to be able to just do it on their own. And it becomes this vicious cycle and catch 22 for these individuals.
 
 Nancy Cavey [00:35:10]:
 And that's great insight because at step five, which is where most of these cases are decided, the test is a crazy test and this is how I explain it to my clients. It's is there other work in the mythical hypothetical, not real world national economy that does not pay a living wage that you wouldn't want to do if you have your age, your education, your skills and your restrictions? And in the context of autism spectrum disorder claims, psychological claims, the way I try to go about winning them is exactly what you talked about. The difficulty with self care, no motivation. They don't bathe, they don't dress, they don't eat. They have to be reminded to do those things. They don't want to go out in public. They have difficulty communicating, staying on task. And as I do this, sometimes I'm wondering, and by the way, I have a lot of, as you pointed out, there's a lot of post traumatic stress disorder type presentations that I see.
 
 Nancy Cavey [00:36:19]:
 So I see anxiety, depression, post traumatic stress disorder, autism, and I presume based on your experience that that is a common presentation. Would that be correct?
 
 Nicole Clark [00:36:35]:
 Yes, absolutely.
 
 Nancy Cavey [00:36:37]:
 Now what Social Security does is they tend to reduce psychiatric conditions in their analysis to an inability to basically do well. What they'll say is you can only do simple, routine, repetitive tasks with no contact with the public and limited contact with co workers and supervisors. To me, that kind of misses a lot of the symptoms and functionality issues. What other observations do you have about symptoms and functionality that could get us kind of beyond this Social Security simplistic evaluation of psychological conditions, autism and spectrum disorder issues? Any thoughts?
 
 Nicole Clark [00:37:34]:
 Yes, some of that broke up a little bit. So I'm going to try to check with the reception issues where I'm at in Humatilla, Florida. I think that the problem is we changed the DSM 5. Right. The DSM 5 change that we saw is we said, hey, this is a spectrum and someone can fall anywhere on the spectrum. Yet we didn't change our thought process of how we're going to categorize spectrum when it comes to things like Social Security disability or when it comes to things like what resources they need. We think that they should all kind of fall on under this cookie cutter definition or this cookie cutter explanation. And that should work.
 
 Nicole Clark [00:38:19]:
 One of the comments that you Made about. They say you should work in an area that there's not a whole lot of social interaction, that things like that. Well, now you've pigeonholed them into that area, so good luck finding that job. Or the opposite is okay. But what about the people with autism spectrum disorder that they seek social communication, right? They, they have to have that. But then they also need really frequent breaks because they get overwhelmed. But they need that social interaction. They have to have that as part of their social differences.
 
 Nicole Clark [00:39:02]:
 Right? Is they crave that. So what about them? So if we're creating these cookie cutter criteria that doesn't recognize everybody on the spectrum, that's where we get this break between what precedents and what legislation, what laws are out there and what the clinical and the medical community is saying this actually is. And we need those two functions and systems to talk.
 
 Nancy Cavey [00:39:29]:
 That's fantastic. Point. As we've talked about Social Security and how I go about, and lawyers go about proving a person's entitlement to benefits, tell me, from your perspective as a clinician, how can my clients, your patients, make sure that medical providers are really documenting the symptoms and functionality that impact their ability to do past work at step four and other work at step five? What suggestions do you have?
 
 Nicole Clark [00:40:08]:
 I think it comes down to doing a really thorough, collaborative and appropriate evaluation of that individual. So when we do an autism evaluation, we're not just doing, I mean, first of all, the evaluation appointment itself in office is about two hours long. And we utilize the ADOS 2 autism diagnostic observation schedule. It tends to be the gold standard. Standard. It's what the insurances, apd, Social Security wants to see done. But we're also using a ton of other tools as well. And we are doing a very deep dive into their history.
 
 Nicole Clark [00:40:45]:
 We are collecting every single past evaluation that they've ever had done. And if they're an adult, it goes back far. Right. We're maybe talking to their parent or their caregiver or their aide to say aunt, uncle, grandparent, whomever it may be to say, hey, what mile. Do you remember if they hit their milestones on time? Do you remember if they pointed when they were a little kid? How were they at their second birthday? You know, we're trying to dig deep into their past history and then we're going to parse through every evaluation that they've had done. We're also going to add on all of the psychiatric testing as well to really get to the bottom of this individual what their life experiences were and to be able to say, you Know, because we see some really complex cases. We get a lot of second and third opinion cases. And a lot of the time it's trying to differentiate.
 
 Nicole Clark [00:41:42]:
 Is this a child that. Or is this an adult that potentially had a reactive attachment disorder that was undiagnosed as a child, and that's the cause for their behaviors right now? Is this ptsd? Is this all of the above? Is this PTSD and autism? You know, and so we're really digging into this person's history and digging into their symptoms and what they're reporting and what those around them are reporting. And we're. We've gotten really good at this, where we can pick up on these little subtle cues of things that they say that we'll kind of pick apart. We'll be like, oh, you know, you said you didn't have a whole lot of friends when you were growing up. You know, did you ever get bullied when you were a kid? And did you, you know, and we'll start to dig into social relationships, typical social relationships, and do they understand what a typical social relationship is and their role that they have to play within that relationship? And so these tests on a really complex adult, it could take upwards of 16 hours to complete this evaluation. On the provider side, the problem with insurance, you know, kind of just briefly going back to the wait list, insurance is only going to reimburse roughly 200 to $600 for this whole test. And that's why most providers won't do this.
 
 Nicole Clark [00:43:02]:
 It's also really rare for a psychiatrist to actually do this. Psychiatrists tend to feel like, no, this is developmental. This is neuropsych. This isn't my scope. Well, it is. That's another problem that we see is Social Security, apd, Medicaid, they tend to push back a whole lot harder on a diagnosis being done by a psychologist than they do by a medical doctor. Wrongfully. Right.
 
 Nicole Clark [00:43:33]:
 That I want to be clear about that. There's a lot of psychologists out there that are absolutely brilliant in this field. They should not be pushing back on them. But a lot of MDs will not even touch this area. And so then the client is hurting because it's, you know, a lot of our report. We write our report in a way that we're taking away any ammo.
 
 Speaker D [00:44:03]:
 Okay, so it seems Nicole dropped her a second. So I'm going to note this, and then when she comes back, we can pick up from ammo.
 
 Nancy Cavey [00:44:09]:
 Okay, I'm going to ask a couple more questions.
 
 Nicole Clark [00:44:13]:
 It says I'm reenacting, so.
 
 Nancy Cavey [00:44:17]:
 Go ahead Josh. Okay.
 
 Speaker D [00:44:18]:
 Yeah, I was gonna say so when. Yeah, we can hear you again. So you dropped off right at. You said ammo was your last word. If you, if you remember where you were going with that. Yeah, I'm gonna take myself out and then you can pick up from, then you can pick up from ammo.
 
 Nancy Cavey [00:44:40]:
 Okay.
 
 Nicole Clark [00:44:43]:
 So we try to write these reports in a way that we're taking away any ammo that Social Security or APD or Medicaid or any of the other commercial pay or insurances have to push back on this person getting access to resources that they need to one survive. Because a lot of these cases, these are life or death cases, right? It's frequent Baker acts, it's frequent suicide attempts, it's things like that. And so we want to make sure that they are able to survive in this world and then become productive members. So I think lastly what I'll say on that is it's important to also look at the intellectual functioning when we're talking about functional limitations when it comes to autism. That's a part of the DSM 5TR is that we have to look at. We have to be able to say either A, this is their behaviors are not due to an intellectual disability or B, there is a co occurring intellectual disability which is really quite common with autism spectrum disorder.
 
 Nancy Cavey [00:45:42]:
 Cole, that was a great segue for our listeners. There's a recent case called MacKenzie Marie Johnson versus, I can never say the name K. Zezaka, who was the former acting commissioner of the Social Security Administration. It's a children's SSI case, a reported decision. I think it's like 23 pages. And I asked Nicole to go to law school and read that case for me because that case brings up a number of the issues that I see in these cases, particularly the question of iq because the Social Security administration and I'm not seems to me to sometimes discount the autism diagnosis and they go right past that to the IQ issue. So could you please speak to that for us?
 
 Nicole Clark [00:46:37]:
 Absolutely. And I did. I reviewed that whole case. I love it. I'm kind of a nerd when it comes.
 
 Speaker D [00:46:50]:
 Okay, it dropped again. So I'm going to make that node and then we'll pick up from where she left off when she reconnect.
 
 Nicole Clark [00:46:58]:
 And this. Ah, Am I gone again?
 
 Speaker D [00:47:03]:
 Yeah. Okay. Yeah, you just came back with your.
 
 Nancy Cavey [00:47:06]:
 Answer all over again.
 
 Speaker D [00:47:07]:
 Yeah, you dropped when you said okay, I'm sorry again. Okay, so I'm going to take myself out and you can pick up from there.
 
 Nicole Clark [00:47:15]:
 Okay, let me try to move My.
 
 Speaker D [00:47:17]:
 Oh, yeah, yeah. All right.
 
 Nicole Clark [00:47:19]:
 Okay.
 
 Speaker D [00:47:20]:
 Let me take myself out and then like, yeah, pick up from that answer. When you were saying, yes, I reviewed the case file. I'm kind of a nerve for that.
 
 Nancy Cavey [00:47:28]:
 Okay.
 
 Nicole Clark [00:47:32]:
 Yes, I reviewed that entire case file and I highlighted and I really looked at that. And I'm kind of a nerd in the sense that I really enjoy reading legal precedents, I enjoy leading, reading state and federal statutes. I've become somewhat of a, you know, backyard Facebook attorney type person. Although I never give any advice to anyone because I'm not that bad. Right. But I really. It's because if I can educate myself on the law and on precedent, then I know where, what direction to point my clients into. I don't have the answers for them.
 
 Nicole Clark [00:48:04]:
 I'm not an attorney, but I can at least point them in the right direction and I can be educated for my own kids as well. And so with that case, you know, One of the DSM 5tr, because now we have a text revision for the DSM 5 is that we have to look at the intellectual disability. Like I said, we will send clients to. We contract with different neuropsychologists and we send them to the neuropsychologist for cognitive testing when we're doing an evaluation. Now, where does that come into play? That comes into play with someone's capacity to learn new behaviors. That also comes into play with someone's adaptability and whether or not they can adapt to different environments. I think that it's a very important topic to have, but I also think that it changes in the medical field. If you ask any psychologist, if you ask any researcher, clinical psychology researcher, anything like that, everyone across the board, including in the tools that are used, such as the wisc, which is the Wesler Intelligence Scale, and all of these different tools.
 
 Nicole Clark [00:49:15]:
 It tells you, do not get hung up on the IQ score. It's not that accurate. Everyone wants to get hung up on that total score, that comprehensive score. It's really not that accurate. What we want to look at is we want to look at their functioning and their intellectual and cognitive and executive functioning among the different domains that that test is looking for. For that's going to give you a better idea. And so with that case report that you sent me, one of the things that completely got under my skin and it just made me want to like, go shake this person into like some common sense is the terminology that was used frequently. High functioning.
 
 Nicole Clark [00:50:02]:
 High functioning. This is a high functioning person. This is a high functioning autistic person. This person has low functioning autism. We are getting away from that. And we're getting away from it because it hurts the individual. It hurts them, because if you have a Social Security judge that automatically has this terminology in their head of, oh, they're high functioning. They are going to make decisions based off of that false broadcast, catch all terminology.
 
 Nicole Clark [00:50:37]:
 An individual might be really, really high functioning in their social domain and really, really low functioning in their repetitive behaviors. They can fall anywhere on that spectrum and it changes throughout their life. And so cognitive testing is important because it lets us know what is their capacity to learn and modify their behaviors. So when you have a child that has or an adult that has an intellectual disability, where they have a lower capacity to learn new behaviors, that tells me, as a clinician, it would take this child might take a year to learn this behavior that I'm teaching them, Whereas another child with higher capacity to learn or a higher cognitive functioning, they might learn that new skill in a month. It creates its own subset of issues, but it is not the only issue because again, it changes throughout their developmental period. And that's where that autism is really, really important to look at the autism piece, because the autism piece is going to come with its own set of potential problems throughout their lifespan. The intellectual disability piece might come with another set of problems, but we have to look at them side by side. You can't just take one over the other and make these generalized decisions.
 
 Nicole Clark [00:52:15]:
 And that's the problem with the cookie cutter model of deciding someone's future and someone's fate.
 
 Nancy Cavey [00:52:21]:
 Nicole, I've learned so much today talking with you before we close. You're based in Florida, but where would someone find someone like you and Dr. P? Is there some sort of organization that has a list of specialists such as yourself or services such as your facility has?
 
 Nicole Clark [00:52:47]:
 So I think Autism Speaks is probably the only one that I found that has a national database of people that can do the evaluation. But it's not all encompassing. You know, I tell people, contact your local department of health because they will normally keep a database. CDC will normally keep a database, but not always.
 
 Nancy Cavey [00:53:11]:
 Yeah, you heard me. So if someone wanted to contact you and your facility and Dr. P, how would they go about doing that?
 
 Nicole Clark [00:53:21]:
 They can call us, they can text us, they can find us on Facebook. So our Phone number is 844-550-7337. Our website is www.pedspedsinstitute.com. you can, like I said, find us on Facebook. And then I also created a podcast just to share resources about mental health special needs parenting. And we talk a lot about IEPs and different advocates and what they do and why they do. And I bring great people on the podcast. Nancy.
 
 Nicole Clark [00:53:55]:
 Nancy, I obviously want to bring you on my podcast because you come with.
 
 Nancy Cavey [00:53:58]:
 A what's the name of your podcast?
 
 Nicole Clark [00:54:00]:
 Please, I want you to I, I Sorry. It's the Adult and Pediatric Institute. It's not a fun name. All the fun names I really wanted, like the Messy Mom Podcast podcast and things like that, they were all taken. So we called it the Adult and Pediatric Institute Podcast. But they can listen to it anywhere that they listen to their podcast, Spotify, Apple.
 
 Nancy Cavey [00:54:20]:
 Well, a special thanks to our guest, Nicole, and thanks for tuning in this week. If you found this episode helpful, please take a moment to like our page, leave a review and share it. And obviously, we look forward to having you come back and listen to our next insightful episode of Winning Isn't Easy. Thanks.