Collaboration in Autism Care and Services

who has joined us this afternoon for the Department of Psychiatry and Behavioral Sciences Grand Rounds series. We are really fortunate this afternoon to have two of our colleagues from the Center for Development and Disability. Pat Osborne is a speech and language pathologist by training. She is the Associate Director of CDD and is the Director of the Autism Programs and is the Program Director of the Mexico START Program. because she just doesn't have enough to do. She has been with CDD for 30 plus years working both clinically and programmatically. She has extensive experience working with individuals with autism and other disabilities, as well as their families, and is involved with statewide policy efforts around disabilities. Tiffany Otero is a licensed psychologist and the clinical director of the New Mexico START program at the... UNM CDD. She specializes in diagnostic assessment and mental health intervention for individuals with known or suspected developmental differences. She began her career as a behavior analyst and special educator before pursuing her degree in school psychology with an emphasis in pediatric neuropsychology. Her research interests include diagnostic evaluation of individuals with autism. spectrum from culturally and linguistically diverse backgrounds, trauma-informed care, and social skills intervention. Dr. Otero was with us for a time and did a sojourn away, and we are delighted that she has found her way back and joins us again on this side of the campus. So they will be talking to you today about the New Mexico START program, which is a relatively new program. for New Mexico that focuses on collaboration of services to assist individuals, I think, six and older who have intellectual disabilities. So I will turn it over to you. Thanks so much for being here. Thank you. We appreciate it. All right. So yeah, as As Dr. Waldorf said, we will be talking to you today about a lot of our work with the New Mexico START program, beginning primarily with just talking about who it is that we serve, what is the type of presentation that we are seeing and identifying, and then giving some research as to the recent prevalence for autism spectrum disorders and co-occurring conditions. We will also be talking about the variability in those presentations and how this intersects with mental and behavioral health challenges. And a lot of what we're going to be talking about today is ways that we can support collaboration across the disciplines. You know, how can we support you in providing medical care to individuals who have severe behavioral health challenges and different things like that. And a lot of this, most of this is coming from our work with New Mexico START. and what we are learning as we have launched and just started forging this path. Pat, I don't know if you want to add any more to that. I think that's great, Tiffany. We'll just sort of weave this in and out. But yeah, I think that's great. Why don't we just go ahead and get started? Thanks. Got it. All right. So if you've seen a diagnosis of autism spectrum disorder, this is probably what you are. familiar with looking at, we look at two different domains of diagnostic domains. We look first for the deficits in social communication and then presence of restricted interest or repetitive behaviors. We compare that to their level of cognitive functioning to see if those discrepancies reach that point of clinical significance. So I'm running through this quickly because I imagine we are all familiar with at least the primary features of autism. Um, where we're really going to be spending some time talking about this bottom portion here are the variability and presentations based on the level of support someone needs. So you may have heard level one, level two, level three autism. I, as a provider, tend not to use that because they do not have any concrete objective meaning. When we are qualifying the level of impairment, we do it based on the amount of support that that person requires in order to be functional and independent in their life. And then we also have qualifiers for with or without cognitive impairment and with or without language impairment. And we'll look at some of those numbers in the research coming up here. What the diagnostic process actually entails, so you've seen the diagnosis, but the diagnostic process itself is extremely complex. So some of you have maybe had a chance to observe some of our clinics. But what we are doing is in addition to those two core diagnostic domains, we are looking for the range of ability, intellectual ability, the range of language skills, the range of adaptive functioning. and then all of these other surrounding co-occurring medical and behavioral conditions. So as you can imagine, it's a big long process for a lot of these families. It's an exhausting process for the kids, but you can see there even just looking in the nested circles how many possibilities there can be in presentation and the complexity we can see in the presentation of individuals. all the way from very severe, profound deficits to very nuanced or maybe masked or hidden deficits that are still having a significant impact on someone's life. Our evaluation team usually consists of a few providers. Typically, it's going to be myself, a psychologist, or with a trainee, and a speech and language pathologist. Our evaluations are A couple parts, we do a thorough interview, lots of times with multiple people, and a thorough evaluation, again, looking at the cognitive adaptive behavior communication, autism-specific characteristics, and then those mental behavioral health screeners, just trying to get at that full picture of the presentation for the individual. Something that we want to make sure we convey to a lot of our different discipline providers is that the size of the team is not necessarily dictated by the nuance or complexity of the diagnosis. So we've heard in some instances where families will come to us and like, well, you know, they've been seen multiple times. They don't have communication impairment. They don't have intellectual disability. But nobody can really see the autism. Can we have the full team here? Without multiple systems affected, you don't need an SLP. You don't need an occupational therapist. you're going to sit with a psychologist and they're going to do a bit more of a deeper dive into some of those referring concerns. But the size of the team is really dictated by the number of systems affected and not the complexity of the presentation. So a lot of us have probably seen this at this point. The recent Center for Disease Control and Prevention report from the autism diagnosis, ADDM, I forgot what it stands for, but the monitoring network for the prevalence of autism. It's now estimating that one in 36 individuals are identified with an autism spectrum disorder. Equates to about 2.8% of children in the US. It occurs across all racial and ethnic groups. It's still more common in males, but there's a lot of research coming out now about the nuanced presentation in females. and some of the different quality of social characteristics that maybe were missed in decades prior. Again, going back to that variability in presentation, about 38% are qualified as having an intellectual disability or an IQ below the standard score of 70. Around 23% are in the borderline range. and around 38% are qualified as having an average or higher IQ. What's interesting here is girls in these prevalence estimates and these research articles are more likely than boys to have intellectual disability with autism spectrum disorder. Part of the thinking there is that girls with average or higher range IQ skills were the ones that were maybe masking or being missed in the diagnosis. So that may not be an accurate presentation, but it's just something that has been that has happened through the way that they were being diagnosed before. Black children more likely than Hispanic or white children to have an intellectual disability with ASD. With regard to communication impairment, around 63% of all children diagnosed with ASD. are going to have language impairment. So this ranges all the way from few to no words, all the way to having conversational speech, but that's still marked with this characteristic, maybe delay or rigidity or literal concrete thinking that's coming out in their ability to exchange ideas. Excuse me. So you'll sometimes see additional diagnoses of expressive receptive language disorder or just expressive language disorder or pragmatic communication disorder. Also, we do know that around 47% of adolescents with ADHD also have ADHD. really executive functioning is it's not a diagnostic domain. So all the abilities of planning, shifting, organizing, monitoring attention, focusing that, it's going to be impacted as a part of the developmental process. Not everyone is going to get a diagnosis of ADHD, but we do know it's very, very common in the individuals we serve. And this is something that will come up as we talk about medication adherence a bit later. anxiety affects around 90, I'm sorry, 39% of adolescents have an anxiety disorder. What's interesting here is it's higher in those without intellectual disability. So one of the thoughts around that is that individuals who have intellectual disability often also have communication impairment. So part of it is maybe they can't communicate their internal state in order to qualify for a diagnosis of anxiety. Also, there is a certain awareness that is present in individuals who have higher cognitive abilities, but without the accuracy of those that don't have autism. So I could know I'm different. I can know something is wrong and that I'm missing things, but I don't know how to manage it. I don't know how to rectify it. And that is an extremely anxiety-inducing position to be in. So a lot of individuals that have verbal language. with ASD have expressed to us that discomfort of, I know something's wrong, but I can't fix it. Severity of restricted interests and repetitive behaviors has been shown to be predictive of co-occurring anxiety in adulthood. Another common co-occurring circumstance with individuals with ASD is a their interaction with adverse experiences, and their endorsement of traumatic experiences. So they're more likely to experience these more often and with a greater intensity. Some of these are due to their inability to communicate when something's uncomfortable. Also, their cognitive functioning, their difficulties in perceiving what's happening in life, especially with medical care. They can't often conceptualize why something's happening to them, why are they getting stuck with needles, why are they pinned down to a bed. There are actual social experiences that they experience more than those of us that don't have social deficits, such as ostracism, bullying, and more invasive medical procedures. They also have just a different sensory experience. So we know sensory differences are a core characteristic deficit. or sorry, a core characteristic difference in individuals with ASD. So sound can be a more aversive experience for some versus others, or texture, different things like that, all the way to the point where maybe it's impacting their ability to consume food or to participate in school. So they can have that impact to their nervous system that qualifies as a traumatic experience. So I won't read through all of these, but you can see here that in some of the research that compared to those without ASD, they found clinically significant differences in these conditions. So they are more likely to experience psychiatric conditions and more likely to experience certain medical conditions. So we do know that this is a whole body experience that is happening for them. It's not all doom and gloom. Early intervention does work. Consistent intervention does work. And a lot of individuals with ASD, around two thirds, have this extreme variability in their profiles. So a lot of them will have particular neurocognitive strengths or skills, or sometimes that ability to hyper focus is actually something they can use in employment or. towards a goal-directed endeavor that is helpful to their quality of life. So we do know a lot of individuals have a lot to... give us in terms of their ability to do really special and unique things. And most individuals who receive intervention from childhood will have improvements to adulthood. So we'll see reduction in symptom severity, so the amount of supports required will shift over time. We'll see improvement in social skills. Many who are non-verbal will get some functional communication, whether it's through pictures, some words, or another means of communication. Ritualistic or maladaptive behavior tends to reduce with age. This includes aggression and improvement in adaptive functioning and increased independence. All right. I'll go into now the care needs in the ASD intellectual disability population. And this is where we can talk a bit more about what START is doing or at least trying to do. We've maybe all heard before, it's all in their head or that's a psychological problem, not a medical problem. This isn't something I need to worry about. And what we know is that the body now is a connected unit. Brain feeds signals to the body, body sends it back. If you have a developmental process in your brain that's going to go off of the typical trajectory, we're going to see development over time that's going to be affected. So we use a biopsychosocial approach to understanding an individual's strengths as well as their vulnerabilities. So for anyone that works with START, we develop this table for them through a series of intake questionnaires. And this helps us to lay out and see and hypothesize what are the things about their life that are resulting in crisis for them? Or what are the things in their life that we need to do? to improve their quality of life and how do we set up those systems for them. And this is a fictional individual, but it's based off of actual individuals that we've worked with. And you can see here the complexity of the biological, psychological, and social systems. Additional barriers affecting access to care include Individuals with ASD reporting just lack of satisfaction, not only in their medical care, but also in their intervention care. That's been a big conversation that has come up probably within the last 10 years. There are increased barriers to mental health care, particularly for those in a non-crisis circumstance. So we know that a person who is, you know, they present to the psychiatric emergency services, they will get service. But someone who is saying, hey, I have anxiety. and I have ASD, a lot of them are being turned away by like, I'm sorry, I don't know how to treat ASD. And that has been a really big barrier, especially for individuals in our community to access services. They have lower satisfaction with medical care. There's more increased risk of injury. And there are often missed medical diagnoses due to the behavioral presentation and the communication impairment. We've had a couple in the hospital so far that they will finally do a dental examination and identify multiple cavities and this is an individual who's been self-injuring for months so that is something that tends to happen and be a barrier to care. Having severe and challenging behaviors does impact care. We do know that a lot of individuals do display aggression. The prevalence is highly variable. When I looked at the research on this, it's because aggression in some instances is identified as a smack, and aggression in some is identified as like I've caused physical injury to another person's body. So you can see that the range there is really wide. It's associated with age, so younger kids will display more aggression than older kids, and language ability. You can't talk, you're more likely to smack someone to get them out of your face because it's just effective. Um, IQ and adaptive functioning are also associated with lower levels of IQ and adaptive functioning being more associated with aggression. Self-injurious behavior is something we also commonly see in around 42% of individuals with ASD. And similar to aggression, it's associated with adaptive functioning, communication, IQ, sleep, and sensory processing, as well as that impulsivity and overactivity. We do know that in some research around sensory differences, pain tolerance is sometimes effective where they tend to have a higher pain tolerance. So we coach families are really watching for marks on the body because an individual may not know when they've caused tissue damage. I would love to once we get to questions and answers, I would love to hear your all's experience with this. Medication adherence in children tends to be about fairly moderate. So if you look off the left here. Around 44% are taking their ADHD meds, and about 40% are taking antidepressants, and about 52% are adhering to taking their antipsychotics. So these aren't the kids that are taking these, prescribed these medications. These are the ones that are actually taking their medications of those prescribed. Significant predictors of adherence. If an individual has more aggressive behaviors, more abnormalities in their ability to eat, drink, and or sleep. Co-occurring ADHD and then the medication regimen complexity index, if it's more complex to maintain it, it's likely going to be something they have trouble adhering to. We do see in the START program this happen. Individuals who sometimes need the most psychotropic involvement tend to be the least adherent to it. So we've got a few that just. get very violent when they have to take meds or they get very suspicious when they have to eat food because in the past their parents have put their medication in their food so then they don't want to eat anymore. So we have a lot of challenges with this in some of our more acute cases. So those are the barriers, the care needs and the barriers. I'm going to turn it over to Pat. as she talks more about the START program, our philosophy, and how we have gone about providing comprehensive and accessible care. And you just let me know when you want me to advance the slide, Pat. Oh, thank you so much, because I'm not as multitasking as you, so thanks very much. So go ahead and advance this one. All right, so first of all, just kind of a general overview. The START model has been around for probably 30 years. It was developed out of the new model. University of New Hampshire and has just been refined over the years. And the iteration that we are seeing now is the most refined it's been in that amount of time. It's evidenced, informed. Everything we do is evaluated. Everything we do is documented. And START, people ask me this a lot, what does START stand for? It actually stands for Systemic Therapeutic Assessment Resources and Treatment. So it's all of that. That's what the model actually does. What I love about this model, and I'm going to get into the positive psychology piece, but what I love about this model is that we're not just looking at the individual because START is a crisis prevention and intervention model. So when people call us, they're in crisis. Something's happened. They're in danger of losing their home, in a group home, they're in danger of being... kicked out of school, you know, something is going on. It's a crisis time. And so, those are the people that we're seeing. What we really hope to do is not just work with that individual who's having the crisis, but work with the system surrounding the individual. That's why it's called systemic, which I absolutely love. Because as we all know, systems that surround people can also influence. how they are treated and how they behave and what their outcomes are. So we're really looking very holistically at the individual, but also very holistically at the models that are supporting that individual. One of the tenets of START is all based on positive psychology, which is a true scientific approach. It is not toxic positivity or anything like that. It really is based on some pretty solid tenets. And it really is looking at focusing on individual strengths instead of deficits, and really just improving quality of life. And Don Tomasulo, Dan Tomasulo, who has written a lot on positive psychology, talks about the absence of depression is not the presence of happiness necessarily. So you can go on, Tiffany. One of the things that we talk about, and this is really for our participants who we're working with, our systems, and even ourselves is this whole PERMAplus model of well-being. And the things I've read about PERMA state that it is a new model of well-being. It's a very holistic model, again, which I really love. The P stands for positive emotions. What things just bring a person joy? The E is for engagement. What are the things that a person can be engaged in? and really kind of be in flow, lose track of time, and just be really focused on. positive relationships, what kinds of relationships are in a person's life, what brings this person meaning, and then what brings them a sense of accomplishment. And for us, this is like for all of us, we could probably go through this and list and check off exactly how we are engaged, what brings us meaning, what brings us a sense of accomplishment. It's been very striking in the individuals we work with. is sometimes we can't fill in all the blanks. We can't find something that just really seems to be bringing them joy or engagement or those kinds of things. And that's when we know those are the things we have to try to fill in and help with. Okay, there's also a whole perma plus. And the plus is all of the other basics in life that we all need to do as well. Things like mindfulness, that could be like my... Meditation could mean like active rest. Exercise movements, also part of PERMA+. Diet and nutrition is very important. And adequate sleep is super important. Yes. And if you look at this acronym, it actually stands for MEDS. And I think this was you came up with this, Tiffany. Did you take your MEDS today? Thank you, Tiffany. That's really good. And so some ways of increasing the PERMA+, and this is what we, again, We talk a lot about the individuals we're working with, but also with the people we're working with in those systems. Things like meditation, journaling, gratitude, of course, is huge. Finding things that you can just lose yourself in, and that's when you're really in flow. Increasing contact with loved ones or friends, social relationships and supports. Sometimes it's spiritual or cultural practices. that we can really look at and say, you know, this has meaning for this individual. How can we give them more of that? Any kind of professional work, any kind of goal-oriented behavior. We had an individual that we were working with who worked. He had a job. He had employment. And one of the things that he liked about having employment was that he had money and he could go shopping. And that really brought him a lot of a sense of accomplishment. This is payday. I can go to the store and purchase things. And then any kind of activities to promote physical health. Other things you can see, having quiet time is really important. Allowing people, and again, we're thinking in this case about the individuals we're sometimes working with, is what kind of sensory seeking behaviors are they showing? And is stimming serving a purpose for them and a calming kind of purpose? Positive affirmations can be another one. Employment, school-based activity, social romantic relationships. Again, all of these spiritual and cultural practices, providing time to engage with those special interests, clear rule-based interventions. Many people that we work with, and many of us probably on this screen, really like rules, and we want to know what the rules are. clear expectations is sometimes really important to the PERMA plus, and then having routines that promote our physical health. All of these are ways of increasing the PERMA plus. The START model itself, I'm going to talk really quickly. It's a tertiary care model. It was really developed on the public health model that the World Health Organization came up with. As you can see, it's the inverted triangle. At the beginning, at the top, it is the primary interventions. Those are the interventions that we can really reach the most people. The secondary interventions are those that we're really starting to hone in on what an individual person or system might need. And then the tertiary are really the ones that are very, very specific. These are very specific for the individual. We have to go in and we've got to get these done now. And you can see that the potential impact of intervention actually goes up as you go from the tertiary to the primary, but your options really decrease about what you can take. In the START model for the primary interventions, we do a lot of trainings. We do a lot of things like we're doing now. We do a monthly clinical education team training where we actually present learning forums and really try to elicit. information from the group about what directions we should be going, we can reach a lot of people that way. But our options decrease as we start really thinking about our individual participants who may down here at this triangle, this point, actually be in crisis. Okay. All right. So our whole purpose, our whole hope is that we are going to increase the quality of life for the individuals we're serving and working with, and that we can decrease the maladaptive patterns of behavior that are actually going to truly send them into those crises and really decrease their PERMA throughout. This is one of the checklists that we use in START to really try to determine how integrated the care is for our individuals. And you can see we try to think of every single person that person may have contact with. And when was the last appointment? Or do they not have? Do they not have a dentist? Many of our individuals do not have dentists. They might not have psychologists. They may not have case managers. all of those things, and do they desire those? So we're really trying to get a snapshot with this form about how integrated is their care and where can we help shore up that integration. Okay. Okay. I'm going to turn it back to you, Dr. Otero. Thank you. Thank you, Pat. So this portion is really trying to convey, and based on what we've learned, based upon our experiences and our research and how to support... individuals with ASD, trying to then give some supports and helpers back to you. If you encounter individuals, developmental differences, what communication differences, IQs are impacted, what can you do? And also letting us letting you know that we are a resource that you can reach out to for consultation and support if you have patients that you are struggling with or you identify that possibly needing a referral to our services. So the first thing that we try to do is, and this is coming from the NICE clinical guidelines, is establishing that partnership. So, you know, a lot of historically, a lot of pushback from autistic advocates has been so much was done about us without us. So now nothing is done about us without us. And so really trying to establish that. partnership with autistic individuals, fostering autonomy, promoting active participation regardless of their level of communicative functioning, and helping them to identify and helping the caregiver to identify ways that they can participate in decisions about their care. An example of this for some of our individuals who have limited language is teaching them the word no and teaching them about consent and letting them know like, okay, Rather than hitting or running or crawling under a car, you can use this word and we will stop what we're doing and give you time or we will explain or we will, you know, come up with a plan so that we can support your care. We know that's not always possible, but that's just an example of things that we try to do. We also try to ensure that we are assessing the desired outcomes of treatment, that the person is. I find that the treatment course is acceptable. So sometimes we will go to their doctor appointments and identify, talk to the family, okay, here's what the doctor's saying you need to do. Are you actually going to do it? We can identify there if there's acceptability and if there's going to be adherence to a medical recommendation. Satisfaction with treatment outcomes, and then also the environmental impact to treatment. So is the doctor's office even providing a space that the individual feels safe in. So we can help and talk about some of those things as a part of our service. Some of the other, these are, and this is truly universal. So I've looked at research on modifying therapeutic practices like CBT and hospital guidelines for how to support individuals in the hospital setting. And by and large, what they all say is visual supports for communication. The more you can provide visual supports, you're going to cover a lot of faces. You're going to cover the gamut and the range of possible communication differences. Also, simplifying your language. And I say even for caregivers, not because caregivers tend not to have intact receptive communication, but because they are taking in a lot of information as well as trying to keep their kid under control. in their presence. So I'm often simplifying language for my for the caregivers we're working with and providing visuals for them as well. developing a routinized structure if possible. So even if, you know, sometimes we've had doctors that the individual sees monthly, and so we can develop a visual schedule, like, okay, we're going to go see Dr. Smith today. Remember, here's the things that we do. We check in, we sit and wait, and so we can help them conceptualize what's going to happen, communicating expectations in advance. and the reasons for certain procedures if you can. Work with caregivers, behavioral supports, and providers to develop a plan to prevent and address the severe and challenging behaviors. What do I do if the child hits me? What if I do if they run out of the room? How can we support them in this? And then for verbal individuals describing their internal states, and I'll have some quotes here in a little bit, helping them to rephrase and restate to support not only your understanding, primarily your understanding, but also helping give them the language so they can convey their information to others more effectively. So these are some examples of visual supports we use here at the center. Yes, no charts, feeling charts, countdown charts, visual timers. We also have a full backpack we're presenting at Philadelphia next week, just full of. tools and toys and activities that they can do while they're waiting. If they're thrown, they're not going to hurt anyone, but ways that we can just help an individual regulate in the medical environment. This is not mine. This is coming from the Zones of Regulation literature. I really like this visual because it provides color, it provides animation and faces, and it provides words. So again, individuals with autism will latch on to different features. And so giving them options for qualifying meaning for them, especially in trying to express how they feel, is going to be really helpful for them. So these are examples are I mean, not verbatim quotes. These are coming from my memory. But these are quotes I've gotten in my practice. And you can see here. just the literal and concrete language. And I'll explain a little bit of the context here and how I've tried to give them language. So the first one here, a man was describing a moment where he truly experienced a traumatic event. And he describes the feeling of, I felt like a gush, like something dropped from my head into my stomach. So what I did for him, what I did is I said, okay, I'm not going to tell you how you feel. I don't have that power. But some people describe what you're saying as like a sinking feeling. And sometimes that can be thought of as like dread or horror. Would you say that that's what you experienced? Yes, that's the word. Okay, when you're talking to someone else about it, you can use that word. Because they may not understand it when you describe it that way. So trying to give them the language so that they can communicate more effectively without telling them how they feel. And these are just some other just really powerful quotes. um the bottom one here i wish i was like the other kids so he was referencing other kids in a more severe um higher support needs program had visible disabilities um and he says i wish i was like them but my disability is invisible and nobody understands but i do and he was explaining his anxiety and being developmentally different and and struggling with his social interactions um another one that we got from an individual was he was talking he was got in trouble and we had to call come out on a crisis call because he was threatening to kill his siblings and he says i don't really want to kill them of course i don't i would never do that but when i'm mad i don't have other words and so understanding that trying to give them other language or trying to give them even visual tools of saying i'm mad um so they don't have to use this because what he's using that for is to get people to attend to him And then get him out of a situation that's really uncomfortable. He doesn't have other words for it. So he's using the most effective thing in his toolbox. And then another one was for a suicide evaluation. I said, do you ever want to go to sleep and never wake up? And he goes, yeah, like hibernation. Bears hibernate. It's cool. It's very, very literal thinking. And this is what was a concerning call for the family. And so when I came out, I was like, okay, he's being just very literal in his answers with you. With regard to handling disruptive, aggressive, or other challenging behaviors, I could do a whole hour just on this slide alone. Biggest thing here, prevention is going to be your best bet. If there's anything you can do, any sort of preparation you can have with a family in trying to reduce the access to triggers, reduce triggering activities. Great. Sometimes just showing up to the doctor's office though can be triggering. So there's only so much you can do. During one of the things that is really helpful is the second bullet point here of honoring, and it's behavior and analytic jargon, but it's a functionally equivalent alternative behavior. What that means is whatever the child is trying to do with their behavior. If they're, if they're aggressing, because they're trying to get attention, or if they're aggressing and then running, because they want to get out of your office. Sometimes what we'll do as a start team is we will teach them something else they can do that still allows them to get attention, that still allows them to get out of your office, but in a way that is less disruptive and not aggressive. So again, saying no, when, and having it honored, like, of course. course, you know, they might need a shot, but if we're teaching them that they have agency in their words, we can try to find a way to help them self-regulate and give them a voice. And then, if we can, limiting punitive or restrictive measures as much as possible. I always tell families, offer, make sure that you let the individual know, hey, you did a really good job, even if they didn't even make it in the building, but they drove out and they didn't. run out into the street like you did a good job. We had a win today. So count your small wins and then provide time for recovery after really stressful events. So I'll turn it back over to Pat to talk about some of our resources and we should have some time for questions. Here are some of our national resources that we wanted you all to be aware of. The other one, of course, is our National Center on START Services. One thing I wanted to just mention really quickly, and you can go on to the next slide, Tiffany, is the National Center on START Services is where we are actually receiving our technical assistance as we're forming our program to fidelity to their model. And they are actually engaged right now in a PCORI grant where they are actually looking at. the efficacy of telehealth during coaching and outreach activities for crisis intervention. And so we will be having some of that information probably within the next year or two of what they're finding. But one of the things they developed for that project was something called the person experience of intervention services. And what they're doing is they're actually asking the individuals who are are involved in crisis services. So they're asking them about their psychiatrist, they're asking them about their psychologist, their counselor, and they're really trying to get a sense of what their experiences have been. And they've been, and I was going to, we were going to have a slide, but they don't have anything really published yet. But some of just the anecdotal stuff is pretty interesting. They had to come up with a whole glossary just to start, because most of the individuals didn't know the difference between... their counselor from their psychiatrist. They had no idea. It was all doctors to them. And so they really had to come up with some ways of doing some education too. But we'll have more information for that probably next year. These are some of our UNM resources at the Center for Development and Disability that you can certainly reach out to at any time. You know, yeah, go ahead. That's fine, Tiffany. And then this is really our... referral criteria for start. We'll go over this just really, really fast because you all can read it. But we really are looking for individuals who have ASD and IDD or IDD and either diagnosed or they are strongly suspicious of having a mental health condition. And you can see the ones we're talking about. We can do some diagnostic clarification, but they really have to have this sort of set of criteria. We really are looking right now for people who are residing within about two hours of Albuquerque. And that's because we need to get to the crises when they're actually happening. And we want to go in person. So two hours is generally a good amount of a radius. And so that's what we're looking at right now. But we're looking at folks who have been in a psychiatric hospital or within the last 24 months. We're looking for people who might need additional staffing. We're looking for those kinds of folks. Have a history of multiple community placements over the last 12 months. And usually these are the folks who've been in and out of community placements. complex mental health needs that have required lots of emergency calls, 911, visits to the ER, at risk of losing their home, work, school placement. That's a lot of our folks. And if they're just presenting with complex behavioral, medical, and or trauma-related issues that appear to have really deteriorated. So those are the kinds of referrals that we're actually looking for that we will be then. vetting before enrolling them as participants into START. All right, so you can go ahead. And then this is how you make a referral. This is our general START line, 505-272-1062. And you can also email us, and we do respond to those emails, cdd-nmstart at salute.unm.edu. So I think we'll have time for questions. Yeah. Look at that, Anne, right at 150, like you told us. Look at that. You guys are so well-behaved from CDB. That's not been my experience traditionally, but that, no, I'm just kidding. I just want to say thank you so much. I think this is, it's a really important program. I think it really reinforces, too, that the Center for Development and Disability is not just about kids, right? That it's really about servicing. New Mexicans who struggle with developmental differences and how can we help them. I don't have any questions in the chat, but Dr. Delmore did ask if you could make the resource slides available to us, that would be very helpful. So you can just send that to Robin if you would be willing to do that and we can send it out. I wonder if other people have questions, you can either put them in the chat or okay Dr. Arendon. Hi thank you for the presentation. I have one question. It seems to me that there's this general discomfort of giving a diagnosis of ASD in general to clinicians. People suspect it but there's like this general you know sense of uneasiness of labeling the diagnosis as it always seems that they need an autism evaluation. They need to be referred to like an autism specialist for this diagnosis to properly be given to the patient. And especially in the context of this program serving people that must have a diagnosis of ASD. What is, I guess I want to learn a little bit about what is the impression of you all and the culture here at the university of giving diagnosis of autism by non-autism specialists? Do you want to take that, Tiffany? And then I have something I can add. I was just going to talk about the, we recognize it too. It's creating a huge bottleneck in our wait list. I know that we have initiated the ECHO program to start to capacity among our community providers to be more, to increase their competence in providing an autism evaluation for the obvious, you know, where it's a really clear presentation. through using a measure called the stat. And so that's being done with Dr. Courtney Burnett, who's leading that effort. Also, a lot of it is not a lot of it. So for Medicaid, there are requirements to access the evidence-based service, the ABA services. So because insurance covers that, they do require a comprehensive diagnostic evaluation by a stage one autism evaluation provider. So you have to have a certain specialty in order to qualify for that through Medicaid. And so that's also another issue. And so sometimes if a diagnosis is given, you know, by a provider, non-autism specialist by history, it doesn't make it any less medically valid, but they may have struggles getting access to services because it's not done through an autism specialist. Does that make sense? Yeah. What I would just add to that is, you know. we started our autism diagnostic clinic, like in the mid 90s. Okay, the numbers then were not one in 36, we could pretty much handle what was coming at us, we can't anymore. And so we really recognize that we have to have capacity building for our other providers who could, you know, make a diagnosis. And that is probably all of you on the screen. And so, as Tiffany was saying, we have started an Echo Autism. for medical providers. They are using the STAT, which is a screener, but they're using it to actually help physicians and other medical folks really observe the behaviors of autism and then treat them in their practices. But we have another echo, which is the advanced diagnostic echo, and that's for community psychologists. And that is really looking at differentials and how do you determine, okay, here comes this. person who may have autism, but do they have anything else? So we are really thinking a lot about capacity building within our system. We started this cohort in the spring. We started it in March. It will run for a year, and then we will have another cohort next spring. So you could join that cohort. We would love to have as many of our UNM folks as possible. Yes, I will absolutely do that because we would love to have you. um and we will be starting that probably February of next year so yeah thanks Dr. Hensley you have a question I do thanks um I'm on a computer that the video is marked so I apologize but um I worked for um Magellan you know we were subcontractors to Crest and Tenno and we had a heck of a time trying to find referral sources for adult patients um With autism, you know, of a wide variety of abilities. And I had a guy recently in the ECT who's, you know, he's depressed, but his mother says, you know, he's a college student. He dropped out of school because of his depression. He's not very active. When he is active, the one day a week he goes to like a church group, he does great. And he had a provider basically tell her, well, don't push him too hard. That's the depression. And I'm kind of like, no, you need to push him hard to not sleep all day because he's a teenager who will sleep all day if you let him. And so she was specifically looking for, you know, groups or something for higher functioning autistic kids who are very capable, but they're just so isolated. And. you know, ostracized by, you know, neurotypical normal, you know, folks. So that was my first question. And then, you know, just about referral sources for us to get people in. And then also, you know, just it seems like the state just in general doesn't want to call psychiatrists able to diagnose autism. And so I recently looked at the rules they have around some of the family therapies and stuff, and they actually list on an LOD, they list what they call medical psychologists as able to make a diagnosis or deliver some sorts of treatment and psychiatrists will not list it. And it's one of my pet peeves because, you know, a psychiatrist should be able to diagnose anything that you know, an autism specialist is able to do, in my opinion. So just if you have any comments about that, or how we can get the state to recognize that psychiatrists are able to diagnose autism, if they're not able to at this point, under the OMI PBRS. Yeah, yeah. Can I take this quickly, Tiffany? And then I'll let you. These are one of those systemic issues that we are sort of ferreting out as we're doing this work. And I agree with you. I think the Medicaid, the way the Medicaid is written is pretty narrow, and I think it has caused our states a lot of issues. And so we're actually talking with them about how do we broaden this a bit for people who have skills, who can do this, right? How do we broaden this? The other thing I will just say is that we too find that for our adults, there is not a lot of resource. And we... personally feel very ethically responsible to develop those resources. And that is something that we are working on. And so, yeah, so I'll turn it over to you, Tiffany. No, I have nothing more to add. That's exactly, yeah. Okay, thank you. I appreciate it. I've talked to some people as part of the Patient Advisory Council through UNM, and that group might be useful resource for you in trying to work out for this population. They're still looking for, you know, patients and family members to participate. in order to give feedback to the university, hospital, to the Highway Improvement Services. But it's definitely something that's needed. And I think that, you know, Medicaid wants to expand services to, you know, autistic children and adults. But they make it so difficult to register. There's a lady who used to work with us who went to Texas. And she has an outstanding organization, but she said it's so difficult. to get approval for her providers to provide care here, you know, that basically they're just starting to approach New Mexico, and they have a lot of capacity. And we really had, we really struggled to find providers for even children in the city of New Mexico, you know, with our, you know, with our kids who had pressed Medicaid. And it's pretty tragic. I mean, we have one right now, I don't know if he's still in, but he's in. the hospital with Dr. Earl, who had been in and out of residential treatment, he would be a great referral to this crisis intervention thing. He does great in the hospital, but when he's home with his four siblings, you know, he threatens to kill them and the mother. And, you know, you can understand her reluctance to have him home. He's a big kid, and he could do some serious damage to younger siblings. So I just applaud what you guys are doing and hope to learn more. Thanks. So we are right at the top of the hour. I know people have to jump off. I don't know, Tiffany, Pat, if you are willing to stay on a couple more minutes. Our colleague, Dr. Kreichman, asked how New Mexico Start can shift the systemic emphasis from diagnosis to providing practical help to people with ASD. Pat? Sure. Well, You know, I always say that diagnosis is just the tip of the iceberg. And when we first started our program many years ago, that was what our focus was. We wanted to get kids diagnosed because then we assumed they would go out and find services. We found that's not so. And so now we have to really be thinking diagnosis is one part at one point in time. How do we get services? How do we train up people through capacity building efforts in our state? so that they can actually provide services for this population. I think it's really critically important because it's shocking to me how many people just absolutely flat out refuse to take individuals with ASD. And these are like counselors. And I had some young adults tell me once with ASD, I said, I had them on a panel and I said, what therapies are you looking for? as adults. I'm a speech language pathologist, right? They didn't say speech language pathology. What they said was counseling. They need counselors. And so I do think that that is a huge issue for our center and for our program. And we hopefully will be working on that. And hopefully we'll be working it with all of you as well. So to one quick question, Dr. Romero asks if there are resources for Spanish speaking families. Are you asking Dr. Romero through START or in general? Really, kind of both, but in general. Thank you. Yeah, we've got, I mean, we've got a lot of resources here at the center. I mean, we have an entire bilingual clinic. So all of our follow-up materials that we provide after a diagnosis, and you don't have to come through our clinic to get them, but we do have resources in Spanish. Through New Mexico Start, we do have a Spanish-speaking coordinator. We hope to expand that capacity, of course. Pat, did you want to add anything else to that? You know, I think we have a family and provider resource network. That was one of the sources of information that we had on our slide, and you can call them at any time. We have Spanish speakers here. We have multiple, multiple, multiple information here that has been translated. for individuals who speak Spanish. We do a lot of that. So yes, definitely. All right, great. There is one, I don't know what your time is. There is one more hand up. I don't know who it is. Who is 2498367? Can you introduce yourself, please? Maybe that was an accidental hand hit. All right then, thanks. to both of you for not only the work you're doing, which is outstanding, but certainly for coming and spending some time with us this afternoon, letting us know about the program. We have several folks that are sort of crossing over between CDD and the department, and I just think the interdepartmental collaboration is fantastic, and thanks again for coming and spending some time with us this afternoon. Thank you for having us. Yeah, thanks so much for inviting us. Yeah, absolutely. Thanks all for your participation.

She has been with CDD for 30 plus years working both clinically and programmatically. She has extensive experience working with individuals with autism and other disabilities, as well as their families, and is involved with statewide policy efforts around disabilities. Tiffany Otero is a licensed psychologist and the clinical director of the New Mexico START program at the...

UNM CDD. She specializes in diagnostic assessment and mental health intervention for individuals with known or suspected developmental differences. She began her career as a behavior analyst and special educator before pursuing her degree in school psychology with an emphasis in pediatric neuropsychology.

Her research interests include diagnostic evaluation of individuals with autism. spectrum from culturally and linguistically diverse backgrounds, trauma-informed care, and social skills intervention. Dr. Otero was with us for a time and did a sojourn away, and we are delighted that she has found her way back and joins us again on this side of the campus. So they will be talking to you today about the New Mexico START program, which is a relatively new program.

for New Mexico that focuses on collaboration of services to assist individuals, I think, six and older who have intellectual disabilities. So I will turn it over to you. Thanks so much for being here.

Thank you. We appreciate it. All right.

So yeah, as As Dr. Waldorf said, we will be talking to you today about a lot of our work with the New Mexico START program, beginning primarily with just talking about who it is that we serve, what is the type of presentation that we are seeing and identifying, and then giving some research as to the recent prevalence for autism spectrum disorders and co-occurring conditions. We will also be talking about the variability in those presentations and how this intersects with mental and behavioral health challenges. And a lot of what we're going to be talking about today is ways that we can support collaboration across the disciplines. You know, how can we support you in providing medical care to individuals who have severe behavioral health challenges and different things like that. And a lot of this, most of this is coming from our work with New Mexico START.

and what we are learning as we have launched and just started forging this path. Pat, I don't know if you want to add any more to that. I think that's great, Tiffany.

We'll just sort of weave this in and out. But yeah, I think that's great. Why don't we just go ahead and get started?

Thanks. Got it. All right.

So if you've seen a diagnosis of autism spectrum disorder, this is probably what you are. familiar with looking at, we look at two different domains of diagnostic domains. We look first for the deficits in social communication and then presence of restricted interest or repetitive behaviors. We compare that to their level of cognitive functioning to see if those discrepancies reach that point of clinical significance.

So I'm running through this quickly because I imagine we are all familiar with at least the primary features of autism. Um, where we're really going to be spending some time talking about this bottom portion here are the variability and presentations based on the level of support someone needs. So you may have heard level one, level two, level three autism.

I, as a provider, tend not to use that because they do not have any concrete objective meaning. When we are qualifying the level of impairment, we do it based on the amount of support that that person requires in order to be functional and independent in their life. And then we also have qualifiers for with or without cognitive impairment and with or without language impairment.

And we'll look at some of those numbers in the research coming up here. What the diagnostic process actually entails, so you've seen the diagnosis, but the diagnostic process itself is extremely complex. So some of you have maybe had a chance to observe some of our clinics.

But what we are doing is in addition to those two core diagnostic domains, we are looking for the range of ability, intellectual ability, the range of language skills, the range of adaptive functioning. and then all of these other surrounding co-occurring medical and behavioral conditions. So as you can imagine, it's a big long process for a lot of these families. It's an exhausting process for the kids, but you can see there even just looking in the nested circles how many possibilities there can be in presentation and the complexity we can see in the presentation of individuals.

all the way from very severe, profound deficits to very nuanced or maybe masked or hidden deficits that are still having a significant impact on someone's life. Our evaluation team usually consists of a few providers. Typically, it's going to be myself, a psychologist, or with a trainee, and a speech and language pathologist.

Our evaluations are A couple parts, we do a thorough interview, lots of times with multiple people, and a thorough evaluation, again, looking at the cognitive adaptive behavior communication, autism-specific characteristics, and then those mental behavioral health screeners, just trying to get at that full picture of the presentation for the individual. Something that we want to make sure we convey to a lot of our different discipline providers is that the size of the team is not necessarily dictated by the nuance or complexity of the diagnosis. So we've heard in some instances where families will come to us and like, well, you know, they've been seen multiple times. They don't have communication impairment.

They don't have intellectual disability. But nobody can really see the autism. Can we have the full team here? Without multiple systems affected, you don't need an SLP.

You don't need an occupational therapist. you're going to sit with a psychologist and they're going to do a bit more of a deeper dive into some of those referring concerns. But the size of the team is really dictated by the number of systems affected and not the complexity of the presentation.

So a lot of us have probably seen this at this point. The recent Center for Disease Control and Prevention report from the autism diagnosis, ADDM, I forgot what it stands for, but the monitoring network for the prevalence of autism. It's now estimating that one in 36 individuals are identified with an autism spectrum disorder.

Equates to about 2.8% of children in the US. It occurs across all racial and ethnic groups. It's still more common in males, but there's a lot of research coming out now about the nuanced presentation in females.

and some of the different quality of social characteristics that maybe were missed in decades prior. Again, going back to that variability in presentation, about 38% are qualified as having an intellectual disability or an IQ below the standard score of 70. Around 23% are in the borderline range. and around 38% are qualified as having an average or higher IQ. What's interesting here is girls in these prevalence estimates and these research articles are more likely than boys to have intellectual disability with autism spectrum disorder. Part of the thinking there is that girls with average or higher range IQ skills were the ones that were maybe masking or being missed in the diagnosis.

So that may not be an accurate presentation, but it's just something that has been that has happened through the way that they were being diagnosed before. Black children more likely than Hispanic or white children to have an intellectual disability with ASD. With regard to communication impairment, around 63% of all children diagnosed with ASD. are going to have language impairment.

So this ranges all the way from few to no words, all the way to having conversational speech, but that's still marked with this characteristic, maybe delay or rigidity or literal concrete thinking that's coming out in their ability to exchange ideas. Excuse me. So you'll sometimes see additional diagnoses of expressive receptive language disorder or just expressive language disorder or pragmatic communication disorder.

Also, we do know that around 47% of adolescents with ADHD also have ADHD. really executive functioning is it's not a diagnostic domain. So all the abilities of planning, shifting, organizing, monitoring attention, focusing that, it's going to be impacted as a part of the developmental process. Not everyone is going to get a diagnosis of ADHD, but we do know it's very, very common in the individuals we serve. And this is something that will come up as we talk about medication adherence a bit later.

anxiety affects around 90, I'm sorry, 39% of adolescents have an anxiety disorder. What's interesting here is it's higher in those without intellectual disability. So one of the thoughts around that is that individuals who have intellectual disability often also have communication impairment. So part of it is maybe they can't communicate their internal state in order to qualify for a diagnosis of anxiety.

Also, there is a certain awareness that is present in individuals who have higher cognitive abilities, but without the accuracy of those that don't have autism. So I could know I'm different. I can know something is wrong and that I'm missing things, but I don't know how to manage it. I don't know how to rectify it. And that is an extremely anxiety-inducing position to be in.

So a lot of individuals that have verbal language. with ASD have expressed to us that discomfort of, I know something's wrong, but I can't fix it. Severity of restricted interests and repetitive behaviors has been shown to be predictive of co-occurring anxiety in adulthood.

Another common co-occurring circumstance with individuals with ASD is a their interaction with adverse experiences, and their endorsement of traumatic experiences. So they're more likely to experience these more often and with a greater intensity. Some of these are due to their inability to communicate when something's uncomfortable.

Also, their cognitive functioning, their difficulties in perceiving what's happening in life, especially with medical care. They can't often conceptualize why something's happening to them, why are they getting stuck with needles, why are they pinned down to a bed. There are actual social experiences that they experience more than those of us that don't have social deficits, such as ostracism, bullying, and more invasive medical procedures. They also have just a different sensory experience.

So we know sensory differences are a core characteristic deficit. or sorry, a core characteristic difference in individuals with ASD. So sound can be a more aversive experience for some versus others, or texture, different things like that, all the way to the point where maybe it's impacting their ability to consume food or to participate in school. So they can have that impact to their nervous system that qualifies as a traumatic experience.

So I won't read through all of these, but you can see here that in some of the research that compared to those without ASD, they found clinically significant differences in these conditions. So they are more likely to experience psychiatric conditions and more likely to experience certain medical conditions. So we do know that this is a whole body experience that is happening for them.

It's not all doom and gloom. Early intervention does work. Consistent intervention does work.

And a lot of individuals with ASD, around two thirds, have this extreme variability in their profiles. So a lot of them will have particular neurocognitive strengths or skills, or sometimes that ability to hyper focus is actually something they can use in employment or. towards a goal-directed endeavor that is helpful to their quality of life.

So we do know a lot of individuals have a lot to... give us in terms of their ability to do really special and unique things. And most individuals who receive intervention from childhood will have improvements to adulthood. So we'll see reduction in symptom severity, so the amount of supports required will shift over time. We'll see improvement in social skills.

Many who are non-verbal will get some functional communication, whether it's through pictures, some words, or another means of communication. Ritualistic or maladaptive behavior tends to reduce with age. This includes aggression and improvement in adaptive functioning and increased independence.

All right. I'll go into now the care needs in the ASD intellectual disability population. And this is where we can talk a bit more about what START is doing or at least trying to do. We've maybe all heard before, it's all in their head or that's a psychological problem, not a medical problem.

This isn't something I need to worry about. And what we know is that the body now is a connected unit. Brain feeds signals to the body, body sends it back. If you have a developmental process in your brain that's going to go off of the typical trajectory, we're going to see development over time that's going to be affected.

So we use a biopsychosocial approach to understanding an individual's strengths as well as their vulnerabilities. So for anyone that works with START, we develop this table for them through a series of intake questionnaires. And this helps us to lay out and see and hypothesize what are the things about their life that are resulting in crisis for them?

Or what are the things in their life that we need to do? to improve their quality of life and how do we set up those systems for them. And this is a fictional individual, but it's based off of actual individuals that we've worked with. And you can see here the complexity of the biological, psychological, and social systems.

Additional barriers affecting access to care include Individuals with ASD reporting just lack of satisfaction, not only in their medical care, but also in their intervention care. That's been a big conversation that has come up probably within the last 10 years. There are increased barriers to mental health care, particularly for those in a non-crisis circumstance.

So we know that a person who is, you know, they present to the psychiatric emergency services, they will get service. But someone who is saying, hey, I have anxiety. and I have ASD, a lot of them are being turned away by like, I'm sorry, I don't know how to treat ASD.

And that has been a really big barrier, especially for individuals in our community to access services. They have lower satisfaction with medical care. There's more increased risk of injury.

And there are often missed medical diagnoses due to the behavioral presentation and the communication impairment. We've had a couple in the hospital so far that they will finally do a dental examination and identify multiple cavities and this is an individual who's been self-injuring for months so that is something that tends to happen and be a barrier to care. Having severe and challenging behaviors does impact care. We do know that a lot of individuals do display aggression.

The prevalence is highly variable. When I looked at the research on this, it's because aggression in some instances is identified as a smack, and aggression in some is identified as like I've caused physical injury to another person's body. So you can see that the range there is really wide. It's associated with age, so younger kids will display more aggression than older kids, and language ability.

You can't talk, you're more likely to smack someone to get them out of your face because it's just effective. Um, IQ and adaptive functioning are also associated with lower levels of IQ and adaptive functioning being more associated with aggression. Self-injurious behavior is something we also commonly see in around 42% of individuals with ASD.

And similar to aggression, it's associated with adaptive functioning, communication, IQ, sleep, and sensory processing, as well as that impulsivity and overactivity. We do know that in some research around sensory differences, pain tolerance is sometimes effective where they tend to have a higher pain tolerance. So we coach families are really watching for marks on the body because an individual may not know when they've caused tissue damage.

I would love to once we get to questions and answers, I would love to hear your all's experience with this. Medication adherence in children tends to be about fairly moderate. So if you look off the left here. Around 44% are taking their ADHD meds, and about 40% are taking antidepressants, and about 52% are adhering to taking their antipsychotics. So these aren't the kids that are taking these, prescribed these medications.

These are the ones that are actually taking their medications of those prescribed. Significant predictors of adherence. If an individual has more aggressive behaviors, more abnormalities in their ability to eat, drink, and or sleep.

Co-occurring ADHD and then the medication regimen complexity index, if it's more complex to maintain it, it's likely going to be something they have trouble adhering to. We do see in the START program this happen. Individuals who sometimes need the most psychotropic involvement tend to be the least adherent to it. So we've got a few that just.

get very violent when they have to take meds or they get very suspicious when they have to eat food because in the past their parents have put their medication in their food so then they don't want to eat anymore. So we have a lot of challenges with this in some of our more acute cases. So those are the barriers, the care needs and the barriers. I'm going to turn it over to Pat.

as she talks more about the START program, our philosophy, and how we have gone about providing comprehensive and accessible care. And you just let me know when you want me to advance the slide, Pat. Oh, thank you so much, because I'm not as multitasking as you, so thanks very much. So go ahead and advance this one.

All right, so first of all, just kind of a general overview. The START model has been around for probably 30 years. It was developed out of the new model.

University of New Hampshire and has just been refined over the years. And the iteration that we are seeing now is the most refined it's been in that amount of time. It's evidenced, informed.

Everything we do is evaluated. Everything we do is documented. And START, people ask me this a lot, what does START stand for? It actually stands for Systemic Therapeutic Assessment Resources and Treatment. So it's all of that.

That's what the model actually does. What I love about this model, and I'm going to get into the positive psychology piece, but what I love about this model is that we're not just looking at the individual because START is a crisis prevention and intervention model. So when people call us, they're in crisis.

Something's happened. They're in danger of losing their home, in a group home, they're in danger of being... kicked out of school, you know, something is going on.

It's a crisis time. And so, those are the people that we're seeing. What we really hope to do is not just work with that individual who's having the crisis, but work with the system surrounding the individual. That's why it's called systemic, which I absolutely love. Because as we all know, systems that surround people can also influence.

how they are treated and how they behave and what their outcomes are. So we're really looking very holistically at the individual, but also very holistically at the models that are supporting that individual. One of the tenets of START is all based on positive psychology, which is a true scientific approach.

It is not toxic positivity or anything like that. It really is based on some pretty solid tenets. And it really is looking at focusing on individual strengths instead of deficits, and really just improving quality of life.

And Don Tomasulo, Dan Tomasulo, who has written a lot on positive psychology, talks about the absence of depression is not the presence of happiness necessarily. So you can go on, Tiffany. One of the things that we talk about, and this is really for our participants who we're working with, our systems, and even ourselves is this whole PERMAplus model of well-being.

And the things I've read about PERMA state that it is a new model of well-being. It's a very holistic model, again, which I really love. The P stands for positive emotions.

What things just bring a person joy? The E is for engagement. What are the things that a person can be engaged in?

and really kind of be in flow, lose track of time, and just be really focused on. positive relationships, what kinds of relationships are in a person's life, what brings this person meaning, and then what brings them a sense of accomplishment. And for us, this is like for all of us, we could probably go through this and list and check off exactly how we are engaged, what brings us meaning, what brings us a sense of accomplishment.

It's been very striking in the individuals we work with. is sometimes we can't fill in all the blanks. We can't find something that just really seems to be bringing them joy or engagement or those kinds of things.

And that's when we know those are the things we have to try to fill in and help with. Okay, there's also a whole perma plus. And the plus is all of the other basics in life that we all need to do as well.

Things like mindfulness, that could be like my... Meditation could mean like active rest. Exercise movements, also part of PERMA+.

Diet and nutrition is very important. And adequate sleep is super important. Yes. And if you look at this acronym, it actually stands for MEDS.

And I think this was you came up with this, Tiffany. Did you take your MEDS today? Thank you, Tiffany.

That's really good. And so some ways of increasing the PERMA+, and this is what we, again, We talk a lot about the individuals we're working with, but also with the people we're working with in those systems. Things like meditation, journaling, gratitude, of course, is huge. Finding things that you can just lose yourself in, and that's when you're really in flow. Increasing contact with loved ones or friends, social relationships and supports.

Sometimes it's spiritual or cultural practices. that we can really look at and say, you know, this has meaning for this individual. How can we give them more of that? Any kind of professional work, any kind of goal-oriented behavior.

We had an individual that we were working with who worked. He had a job. He had employment.

And one of the things that he liked about having employment was that he had money and he could go shopping. And that really brought him a lot of a sense of accomplishment. This is payday. I can go to the store and purchase things. And then any kind of activities to promote physical health.

Other things you can see, having quiet time is really important. Allowing people, and again, we're thinking in this case about the individuals we're sometimes working with, is what kind of sensory seeking behaviors are they showing? And is stimming serving a purpose for them and a calming kind of purpose?

Positive affirmations can be another one. Employment, school-based activity, social romantic relationships. Again, all of these spiritual and cultural practices, providing time to engage with those special interests, clear rule-based interventions.

Many people that we work with, and many of us probably on this screen, really like rules, and we want to know what the rules are. clear expectations is sometimes really important to the PERMA plus, and then having routines that promote our physical health. All of these are ways of increasing the PERMA plus. The START model itself, I'm going to talk really quickly.

It's a tertiary care model. It was really developed on the public health model that the World Health Organization came up with. As you can see, it's the inverted triangle.

At the beginning, at the top, it is the primary interventions. Those are the interventions that we can really reach the most people. The secondary interventions are those that we're really starting to hone in on what an individual person or system might need.

And then the tertiary are really the ones that are very, very specific. These are very specific for the individual. We have to go in and we've got to get these done now. And you can see that the potential impact of intervention actually goes up as you go from the tertiary to the primary, but your options really decrease about what you can take.

In the START model for the primary interventions, we do a lot of trainings. We do a lot of things like we're doing now. We do a monthly clinical education team training where we actually present learning forums and really try to elicit.

information from the group about what directions we should be going, we can reach a lot of people that way. But our options decrease as we start really thinking about our individual participants who may down here at this triangle, this point, actually be in crisis. Okay. All right.

So our whole purpose, our whole hope is that we are going to increase the quality of life for the individuals we're serving and working with, and that we can decrease the maladaptive patterns of behavior that are actually going to truly send them into those crises and really decrease their PERMA throughout. This is one of the checklists that we use in START to really try to determine how integrated the care is for our individuals. And you can see we try to think of every single person that person may have contact with.

And when was the last appointment? Or do they not have? Do they not have a dentist? Many of our individuals do not have dentists.

They might not have psychologists. They may not have case managers. all of those things, and do they desire those? So we're really trying to get a snapshot with this form about how integrated is their care and where can we help shore up that integration. Okay.

Okay. I'm going to turn it back to you, Dr. Otero. Thank you. Thank you, Pat. So this portion is really trying to convey, and based on what we've learned, based upon our experiences and our research and how to support...

individuals with ASD, trying to then give some supports and helpers back to you. If you encounter individuals, developmental differences, what communication differences, IQs are impacted, what can you do? And also letting us letting you know that we are a resource that you can reach out to for consultation and support if you have patients that you are struggling with or you identify that possibly needing a referral to our services. So the first thing that we try to do is, and this is coming from the NICE clinical guidelines, is establishing that partnership. So, you know, a lot of historically, a lot of pushback from autistic advocates has been so much was done about us without us.

So now nothing is done about us without us. And so really trying to establish that. partnership with autistic individuals, fostering autonomy, promoting active participation regardless of their level of communicative functioning, and helping them to identify and helping the caregiver to identify ways that they can participate in decisions about their care. An example of this for some of our individuals who have limited language is teaching them the word no and teaching them about consent and letting them know like, okay, Rather than hitting or running or crawling under a car, you can use this word and we will stop what we're doing and give you time or we will explain or we will, you know, come up with a plan so that we can support your care.

We know that's not always possible, but that's just an example of things that we try to do. We also try to ensure that we are assessing the desired outcomes of treatment, that the person is. I find that the treatment course is acceptable. So sometimes we will go to their doctor appointments and identify, talk to the family, okay, here's what the doctor's saying you need to do.

Are you actually going to do it? We can identify there if there's acceptability and if there's going to be adherence to a medical recommendation. Satisfaction with treatment outcomes, and then also the environmental impact to treatment. So is the doctor's office even providing a space that the individual feels safe in.

So we can help and talk about some of those things as a part of our service. Some of the other, these are, and this is truly universal. So I've looked at research on modifying therapeutic practices like CBT and hospital guidelines for how to support individuals in the hospital setting.

And by and large, what they all say is visual supports for communication. The more you can provide visual supports, you're going to cover a lot of faces. You're going to cover the gamut and the range of possible communication differences. Also, simplifying your language. And I say even for caregivers, not because caregivers tend not to have intact receptive communication, but because they are taking in a lot of information as well as trying to keep their kid under control.

in their presence. So I'm often simplifying language for my for the caregivers we're working with and providing visuals for them as well. developing a routinized structure if possible. So even if, you know, sometimes we've had doctors that the individual sees monthly, and so we can develop a visual schedule, like, okay, we're going to go see Dr. Smith today. Remember, here's the things that we do.

We check in, we sit and wait, and so we can help them conceptualize what's going to happen, communicating expectations in advance. and the reasons for certain procedures if you can. Work with caregivers, behavioral supports, and providers to develop a plan to prevent and address the severe and challenging behaviors. What do I do if the child hits me? What if I do if they run out of the room?

How can we support them in this? And then for verbal individuals describing their internal states, and I'll have some quotes here in a little bit, helping them to rephrase and restate to support not only your understanding, primarily your understanding, but also helping give them the language so they can convey their information to others more effectively. So these are some examples of visual supports we use here at the center. Yes, no charts, feeling charts, countdown charts, visual timers. We also have a full backpack we're presenting at Philadelphia next week, just full of.

tools and toys and activities that they can do while they're waiting. If they're thrown, they're not going to hurt anyone, but ways that we can just help an individual regulate in the medical environment. This is not mine.

This is coming from the Zones of Regulation literature. I really like this visual because it provides color, it provides animation and faces, and it provides words. So again, individuals with autism will latch on to different features.

And so giving them options for qualifying meaning for them, especially in trying to express how they feel, is going to be really helpful for them. So these are examples are I mean, not verbatim quotes. These are coming from my memory.

But these are quotes I've gotten in my practice. And you can see here. just the literal and concrete language. And I'll explain a little bit of the context here and how I've tried to give them language.

So the first one here, a man was describing a moment where he truly experienced a traumatic event. And he describes the feeling of, I felt like a gush, like something dropped from my head into my stomach. So what I did for him, what I did is I said, okay, I'm not going to tell you how you feel.

I don't have that power. But some people describe what you're saying as like a sinking feeling. And sometimes that can be thought of as like dread or horror. Would you say that that's what you experienced? Yes, that's the word.

Okay, when you're talking to someone else about it, you can use that word. Because they may not understand it when you describe it that way. So trying to give them the language so that they can communicate more effectively without telling them how they feel.

And these are just some other just really powerful quotes. um the bottom one here i wish i was like the other kids so he was referencing other kids in a more severe um higher support needs program had visible disabilities um and he says i wish i was like them but my disability is invisible and nobody understands but i do and he was explaining his anxiety and being developmentally different and and struggling with his social interactions um another one that we got from an individual was he was talking he was got in trouble and we had to call come out on a crisis call because he was threatening to kill his siblings and he says i don't really want to kill them of course i don't i would never do that but when i'm mad i don't have other words and so understanding that trying to give them other language or trying to give them even visual tools of saying i'm mad um so they don't have to use this because what he's using that for is to get people to attend to him And then get him out of a situation that's really uncomfortable. He doesn't have other words for it. So he's using the most effective thing in his toolbox. And then another one was for a suicide evaluation.

I said, do you ever want to go to sleep and never wake up? And he goes, yeah, like hibernation. Bears hibernate.

It's cool. It's very, very literal thinking. And this is what was a concerning call for the family. And so when I came out, I was like, okay, he's being just very literal in his answers with you.

With regard to handling disruptive, aggressive, or other challenging behaviors, I could do a whole hour just on this slide alone. Biggest thing here, prevention is going to be your best bet. If there's anything you can do, any sort of preparation you can have with a family in trying to reduce the access to triggers, reduce triggering activities.

Great. Sometimes just showing up to the doctor's office though can be triggering. So there's only so much you can do.

During one of the things that is really helpful is the second bullet point here of honoring, and it's behavior and analytic jargon, but it's a functionally equivalent alternative behavior. What that means is whatever the child is trying to do with their behavior. If they're, if they're aggressing, because they're trying to get attention, or if they're aggressing and then running, because they want to get out of your office. Sometimes what we'll do as a start team is we will teach them something else they can do that still allows them to get attention, that still allows them to get out of your office, but in a way that is less disruptive and not aggressive. So again, saying no, when, and having it honored, like, of course.

course, you know, they might need a shot, but if we're teaching them that they have agency in their words, we can try to find a way to help them self-regulate and give them a voice. And then, if we can, limiting punitive or restrictive measures as much as possible. I always tell families, offer, make sure that you let the individual know, hey, you did a really good job, even if they didn't even make it in the building, but they drove out and they didn't. run out into the street like you did a good job. We had a win today.

So count your small wins and then provide time for recovery after really stressful events. So I'll turn it back over to Pat to talk about some of our resources and we should have some time for questions. Here are some of our national resources that we wanted you all to be aware of. The other one, of course, is our National Center on START Services.

One thing I wanted to just mention really quickly, and you can go on to the next slide, Tiffany, is the National Center on START Services is where we are actually receiving our technical assistance as we're forming our program to fidelity to their model. And they are actually engaged right now in a PCORI grant where they are actually looking at. the efficacy of telehealth during coaching and outreach activities for crisis intervention.

And so we will be having some of that information probably within the next year or two of what they're finding. But one of the things they developed for that project was something called the person experience of intervention services. And what they're doing is they're actually asking the individuals who are are involved in crisis services. So they're asking them about their psychiatrist, they're asking them about their psychologist, their counselor, and they're really trying to get a sense of what their experiences have been. And they've been, and I was going to, we were going to have a slide, but they don't have anything really published yet.

But some of just the anecdotal stuff is pretty interesting. They had to come up with a whole glossary just to start, because most of the individuals didn't know the difference between... their counselor from their psychiatrist. They had no idea.

It was all doctors to them. And so they really had to come up with some ways of doing some education too. But we'll have more information for that probably next year. These are some of our UNM resources at the Center for Development and Disability that you can certainly reach out to at any time.

You know, yeah, go ahead. That's fine, Tiffany. And then this is really our... referral criteria for start. We'll go over this just really, really fast because you all can read it.

But we really are looking for individuals who have ASD and IDD or IDD and either diagnosed or they are strongly suspicious of having a mental health condition. And you can see the ones we're talking about. We can do some diagnostic clarification, but they really have to have this sort of set of criteria.

We really are looking right now for people who are residing within about two hours of Albuquerque. And that's because we need to get to the crises when they're actually happening. And we want to go in person.

So two hours is generally a good amount of a radius. And so that's what we're looking at right now. But we're looking at folks who have been in a psychiatric hospital or within the last 24 months. We're looking for people who might need additional staffing. We're looking for those kinds of folks.

Have a history of multiple community placements over the last 12 months. And usually these are the folks who've been in and out of community placements. complex mental health needs that have required lots of emergency calls, 911, visits to the ER, at risk of losing their home, work, school placement.

That's a lot of our folks. And if they're just presenting with complex behavioral, medical, and or trauma-related issues that appear to have really deteriorated. So those are the kinds of referrals that we're actually looking for that we will be then.

vetting before enrolling them as participants into START. All right, so you can go ahead. And then this is how you make a referral. This is our general START line, 505-272-1062.

And you can also email us, and we do respond to those emails, cdd-nmstart at salute.unm.edu. So I think we'll have time for questions. Yeah. Look at that, Anne, right at 150, like you told us. Look at that.

You guys are so well-behaved from CDB. That's not been my experience traditionally, but that, no, I'm just kidding. I just want to say thank you so much.

I think this is, it's a really important program. I think it really reinforces, too, that the Center for Development and Disability is not just about kids, right? That it's really about servicing.

New Mexicans who struggle with developmental differences and how can we help them. I don't have any questions in the chat, but Dr. Delmore did ask if you could make the resource slides available to us, that would be very helpful. So you can just send that to Robin if you would be willing to do that and we can send it out.

I wonder if other people have questions, you can either put them in the chat or okay Dr. Arendon. Hi thank you for the presentation. I have one question. It seems to me that there's this general discomfort of giving a diagnosis of ASD in general to clinicians. People suspect it but there's like this general you know sense of uneasiness of labeling the diagnosis as it always seems that they need an autism evaluation.

They need to be referred to like an autism specialist for this diagnosis to properly be given to the patient. And especially in the context of this program serving people that must have a diagnosis of ASD. What is, I guess I want to learn a little bit about what is the impression of you all and the culture here at the university of giving diagnosis of autism by non-autism specialists? Do you want to take that, Tiffany? And then I have something I can add.

I was just going to talk about the, we recognize it too. It's creating a huge bottleneck in our wait list. I know that we have initiated the ECHO program to start to capacity among our community providers to be more, to increase their competence in providing an autism evaluation for the obvious, you know, where it's a really clear presentation.

through using a measure called the stat. And so that's being done with Dr. Courtney Burnett, who's leading that effort. Also, a lot of it is not a lot of it. So for Medicaid, there are requirements to access the evidence-based service, the ABA services.

So because insurance covers that, they do require a comprehensive diagnostic evaluation by a stage one autism evaluation provider. So you have to have a certain specialty in order to qualify for that through Medicaid. And so that's also another issue. And so sometimes if a diagnosis is given, you know, by a provider, non-autism specialist by history, it doesn't make it any less medically valid, but they may have struggles getting access to services because it's not done through an autism specialist.

Does that make sense? Yeah. What I would just add to that is, you know.

we started our autism diagnostic clinic, like in the mid 90s. Okay, the numbers then were not one in 36, we could pretty much handle what was coming at us, we can't anymore. And so we really recognize that we have to have capacity building for our other providers who could, you know, make a diagnosis. And that is probably all of you on the screen.

And so, as Tiffany was saying, we have started an Echo Autism. for medical providers. They are using the STAT, which is a screener, but they're using it to actually help physicians and other medical folks really observe the behaviors of autism and then treat them in their practices.

But we have another echo, which is the advanced diagnostic echo, and that's for community psychologists. And that is really looking at differentials and how do you determine, okay, here comes this. person who may have autism, but do they have anything else? So we are really thinking a lot about capacity building within our system.

We started this cohort in the spring. We started it in March. It will run for a year, and then we will have another cohort next spring. So you could join that cohort. We would love to have as many of our UNM folks as possible.

Yes, I will absolutely do that because we would love to have you. um and we will be starting that probably February of next year so yeah thanks Dr. Hensley you have a question I do thanks um I'm on a computer that the video is marked so I apologize but um I worked for um Magellan you know we were subcontractors to Crest and Tenno and we had a heck of a time trying to find referral sources for adult patients um With autism, you know, of a wide variety of abilities. And I had a guy recently in the ECT who's, you know, he's depressed, but his mother says, you know, he's a college student.

He dropped out of school because of his depression. He's not very active. When he is active, the one day a week he goes to like a church group, he does great. And he had a provider basically tell her, well, don't push him too hard.

That's the depression. And I'm kind of like, no, you need to push him hard to not sleep all day because he's a teenager who will sleep all day if you let him. And so she was specifically looking for, you know, groups or something for higher functioning autistic kids who are very capable, but they're just so isolated. And. you know, ostracized by, you know, neurotypical normal, you know, folks.

So that was my first question. And then, you know, just about referral sources for us to get people in. And then also, you know, just it seems like the state just in general doesn't want to call psychiatrists able to diagnose autism. And so I recently looked at the rules they have around some of the family therapies and stuff, and they actually list on an LOD, they list what they call medical psychologists as able to make a diagnosis or deliver some sorts of treatment and psychiatrists will not list it. And it's one of my pet peeves because, you know, a psychiatrist should be able to diagnose anything that you know, an autism specialist is able to do, in my opinion.

So just if you have any comments about that, or how we can get the state to recognize that psychiatrists are able to diagnose autism, if they're not able to at this point, under the OMI PBRS. Yeah, yeah. Can I take this quickly, Tiffany? And then I'll let you. These are one of those systemic issues that we are sort of ferreting out as we're doing this work.

And I agree with you. I think the Medicaid, the way the Medicaid is written is pretty narrow, and I think it has caused our states a lot of issues. And so we're actually talking with them about how do we broaden this a bit for people who have skills, who can do this, right?

How do we broaden this? The other thing I will just say is that we too find that for our adults, there is not a lot of resource. And we...

personally feel very ethically responsible to develop those resources. And that is something that we are working on. And so, yeah, so I'll turn it over to you, Tiffany.

No, I have nothing more to add. That's exactly, yeah. Okay, thank you.

I appreciate it. I've talked to some people as part of the Patient Advisory Council through UNM, and that group might be useful resource for you in trying to work out for this population. They're still looking for, you know, patients and family members to participate.

in order to give feedback to the university, hospital, to the Highway Improvement Services. But it's definitely something that's needed. And I think that, you know, Medicaid wants to expand services to, you know, autistic children and adults. But they make it so difficult to register. There's a lady who used to work with us who went to Texas.

And she has an outstanding organization, but she said it's so difficult. to get approval for her providers to provide care here, you know, that basically they're just starting to approach New Mexico, and they have a lot of capacity. And we really had, we really struggled to find providers for even children in the city of New Mexico, you know, with our, you know, with our kids who had pressed Medicaid.

And it's pretty tragic. I mean, we have one right now, I don't know if he's still in, but he's in. the hospital with Dr. Earl, who had been in and out of residential treatment, he would be a great referral to this crisis intervention thing.

He does great in the hospital, but when he's home with his four siblings, you know, he threatens to kill them and the mother. And, you know, you can understand her reluctance to have him home. He's a big kid, and he could do some serious damage to younger siblings.

So I just applaud what you guys are doing and hope to learn more. Thanks. So we are right at the top of the hour.

I know people have to jump off. I don't know, Tiffany, Pat, if you are willing to stay on a couple more minutes. Our colleague, Dr. Kreichman, asked how New Mexico Start can shift the systemic emphasis from diagnosis to providing practical help to people with ASD. Pat? Sure.

Well, You know, I always say that diagnosis is just the tip of the iceberg. And when we first started our program many years ago, that was what our focus was. We wanted to get kids diagnosed because then we assumed they would go out and find services.

We found that's not so. And so now we have to really be thinking diagnosis is one part at one point in time. How do we get services?

How do we train up people through capacity building efforts in our state? so that they can actually provide services for this population. I think it's really critically important because it's shocking to me how many people just absolutely flat out refuse to take individuals with ASD.

And these are like counselors. And I had some young adults tell me once with ASD, I said, I had them on a panel and I said, what therapies are you looking for? as adults. I'm a speech language pathologist, right? They didn't say speech language pathology.

What they said was counseling. They need counselors. And so I do think that that is a huge issue for our center and for our program.

And we hopefully will be working on that. And hopefully we'll be working it with all of you as well. So to one quick question, Dr. Romero asks if there are resources for Spanish speaking families. Are you asking Dr. Romero through START or in general?

Really, kind of both, but in general. Thank you. Yeah, we've got, I mean, we've got a lot of resources here at the center. I mean, we have an entire bilingual clinic.

So all of our follow-up materials that we provide after a diagnosis, and you don't have to come through our clinic to get them, but we do have resources in Spanish. Through New Mexico Start, we do have a Spanish-speaking coordinator. We hope to expand that capacity, of course. Pat, did you want to add anything else to that?

You know, I think we have a family and provider resource network. That was one of the sources of information that we had on our slide, and you can call them at any time. We have Spanish speakers here. We have multiple, multiple, multiple information here that has been translated.

for individuals who speak Spanish. We do a lot of that. So yes, definitely.

All right, great. There is one, I don't know what your time is. There is one more hand up.

I don't know who it is. Who is 2498367? Can you introduce yourself, please?

Maybe that was an accidental hand hit. All right then, thanks. to both of you for not only the work you're doing, which is outstanding, but certainly for coming and spending some time with us this afternoon, letting us know about the program.

We have several folks that are sort of crossing over between CDD and the department, and I just think the interdepartmental collaboration is fantastic, and thanks again for coming and spending some time with us this afternoon. Thank you for having us. Yeah, thanks so much for inviting us. Yeah, absolutely.

Thanks all for your participation.

Transcript for:Collaboration in Autism Care and Services

Transcript for:
Collaboration in Autism Care and Services