#62 Dr. Nicole Stadnick - Autism Researcher - Why an Integrated Approach to Treatment is Critical

0:00 [Music] hello i'm dr bridget nash and i'd like to welcome you to the therapy show a podcast series that seeks to demystify mental health treatment today i'm honored to welcome dr nicole stadnik who is a psychologist and an assistant professor in the department of psychiatry at the university of california san diego as well as co-director of the altman clinical and translational research institute's dissemination and implementation science center an investigator in the child and adolescent services research center a primary area of dr stadnik's research aims to promote equitable access to evidence-based practices and mental health services for children with autism spectrum disorder and co-occurring mental health needs through tailored service delivery models

0:47 she currently leads several implementation projects supported by the national institutes of health focused on community engaged cross-system health services and implementation research for individuals with complex clinical presentations dr stadnik welcome to the therapy show thank you so much i appreciate this invitation can you start by telling us a little bit about your personal background and professional development that led to research in the field of autism spectrum disorder absolutely thanks so much for that question so my interest in improving care for individuals with autism it started as a college student in arizona where i'm from it progressed through graduate school in clinical psychology and continues to be a really important

1:33 thread in my current work as a university professor a researcher and a licensed psychologist so a little bit more about that background back in college i worked as a respite provider and at the same time was a research assistant on a university-based intervention for pediatric anxiety tailored for latinx communities and with those of those experiences i saw the gap between what's being done in research settings and developing these really beautiful evidence-based interventions and what's happening in real-world practice where i was this breast provider working with parents and we both brought a loss of kind of what were the effects of skills and tools to be using with children who have mental health and autism needs

2:19 so i attempted to learn how to address that implementation gap through my doctoral program in clinical psychology and a master's in public health and my work has expanded over the past decade or so to center on implementation science community engagement and health equity still with a central focus on autism and children's mental health services i have touch points with other communities who are facing health concerns or needs but my start and really my heart is improving care for autism and mental health how would you briefly explain autism spectrum disorder to a non-professional great question so autism is a neurodevelopmental condition meaning that it has roots in a person's

3:06 brain development and their genetic code or makeup so autism can look and be experienced very differently between people and by even the same person as they get older and i really want to emphasize that every person with autism they may have a different experience and a unique way of understanding and experiencing the world in fact there's been recent attention to how a person with autism even describes themselves using person first or identity first language from a clinician's perspective i've been formally trained in diagnosing autism through specialized assessment tools these include interviews with caregivers and individuals you know suspected of having autism themselves

3:51 plus observing those individuals through conversation and play depending on their age in light of the understanding that autism can be experienced and look differently across people the most recent diagnostic manual the dsm-5 it has modified the diagnosis of autism so previously about five years or so or more in the previous version of the dsm autism was divided into several diagnoses so this included autistic disorder pervasive developmental disorder not otherwise specified and asperger's syndrome but now it's combined into the current autism spectrum disorder name a few other pieces to note here so the hallmark features of autism are broadly

4:38 in two main categories so the first is difficulty with social communication and limited or very specific prominent interests or repetitive patterns of behavior these can in turn mildly to very significantly impact a person's school work play or daily activities and the social communication difficulties they can look will be experienced in many ways so they can look like having a difficulty with a back and forth conversation making and keeping friends for young children pretend play can be difficult and the specific interests or repetitive behaviors that second category can also take many forms and it can look

5:25 like a really rigid insistence on routines or sameness that might get in the way of completing expected tasks or maintaining social relationships people with autism they may also experience related behaviors or healthcare needs and so these can include heightened sensitivity to sensory experiences so being very sensitive to light how things feel on their skin sounds as well as a number of co-occurring medical or mental health concerns why is it important that an integrated care model for children with autism spectrum disorder and co-occurring mental health concerns be utilized let me unpack it a little bit but first let me offer a working definition of integrated care

6:12 there are different models and different definitions but the one that i have used in my work to describe integrative care is when healthcare teams collaboratively work with families to make decisions and connect to needed care so as we just talked about children and people with autism they may experience a variety of health care needs including physical health and mental health needs and managing these care interactions with multiple treatment providers or care providers can be really stressful it can be confusing take a lot of time and a lot of persistence and unfortunately the way our health care system is set up in the u.s it can be very fragmented so as you can

6:58 imagine that can be really challenging for everyone patients families providers decision makers so for individuals with autism a common experience to have co-occurring mental health concerns such as difficulties managing anxiety depression attention and challenging behaviors and by common i mean that in some of my own work and others we've seen rates of over 90 so over 90 percent of individuals with autism have a co-occurring mental health need there are often delays in identifying these co-occurring mental health needs until they become almost a crisis point and for kids that oftentimes happens in the school setting this can then trigger a referral

7:44 to mental health services in an integrated care world and something that i've been trying to refine and implement is a model of care that's anchored in pediatric primary care a common healthcare touch point for most children and where mental health needs could be identified early and then care linkage to mental health services can be provided so in some that's the rationale for an integrated care model for children with autism and co-occurring mental health needs i think you're not a psychiatrist but is there a medication that's recommended for someone with autism spectrum disorder or are you oftentimes medicating for other disorders or other symptoms that's a great question and yes i just want to acknowledge that i am not a

8:30 psychiatrist but i've worked in a lot of care teams with psychiatrists and oftentimes the treatment plan for an individual with autism includes a medication evaluation or medication management unfortunately there is no autism-specific medication that has been identified so oftentimes the medications that are prescribed are to help address some of those co-occurring mental health needs so possibly the aggressive behaviors maybe or the attention problems or some of the emotion dysregulation that results from anxiety or depression and i wonder if it's important since there's no medication that's been targeted for autism spectrum disorder

9:16 and there might be behaviors or symptoms that are making it difficult for a child to learn or a child to be in community sometimes it might be important to address those other needs with autism spectrum disorder right right yes absolutely as autism is understood it's pretty pervasive and can be impacting and impactful on all areas of a person's life so absolutely some of those medications and even the non-pharmacological medication might be to help address skill development that could help with the social relationship go with maintaining attention in school or being able to be a little bit flexible if routines or a schedule changes and can you describe the integrative

10:02 care model that you have co-created and what does it entail yes absolutely so the integrative care model that is co-created and i'll go back to that point about co-creation in just a second it's called attain so it stands for access to tailored autism integrated care and it's an eight-step model that provides a road map to pediatric primary care settings how to use a mental health screening tool to identify co-occurring mental health needs and then link to mental health services either within the same health system or to community providers the screening tool that we selected is called the pediatric symptom checklist 17. it's a 17 item questionnaire and it asks

10:48 about different behaviors and how frequently they occur so it's a pretty brief but comprehensive screening tool the project is funded by the national institute of mental health and in partnership with three health care systems that collectively provide the bulk of primary care services to children in the san diego region we were really intentional about including multiple health care systems in this project including a federally qualified health care system this was intentional because we wanted to facilitate our understanding of context and how families from different backgrounds from different associate demographics cultural and geographic regions access and engage with healthcare so i appreciate you mentioning it was

11:34 co-created and so the co-creation happened in a few ways so the first way was through establishing a community and scientific advisory board and this included individuals who are mental health providers pediatricians parents and mental health services researchers so throughout the project as we were co-creating this to be attained model we met about quarterly you know every few months to review materials data collections uh procedures interpret results and make implementation plans so making sure that this eight-step model fit within different clinics and care settings second co-creation method we used was that we tailored each of the attain models to the

12:21 individual health care system and this was really to maximize the fit between the clinic or the health care system current workflow there are capabilities in terms of did i have an electronic health record system that would allow for us to make changes and the organization's values and priorities change is harsh and pediatricians and their care teams are very busy and they're constantly being asked to do more so we need to be really mindful about limiting any disruptions to workflows by trying to seamlessly implement attain as best as possible and so pretty quickly into our co-creation of the pain it was apparent that when trying to to implement or to modify anything in pediatric care settings

13:08 there are multiple individuals who need to be involved or at least aware of a change in practice so this includes not only the pediatrician or the nurse practitioner or practitioner or the physician's assistant who's kind of the lead provider but also their nurses medical assistants front desk staff and of course the health system or clinic leaders an involved process including a lot of different individuals and so we're still refining a pain we completed a pilot study of it in the past year and we look forward to sharing the preliminary outcomes from that recent pilot hopefully later this spring dr stadnik you wrote in one of your journal articles that children with autism spectrum disorder have high unmet

13:54 mental health needs due in part because identifying mental health problems in these children is complex under identified and subject to diagnostic overshadowing in which co-morbid mental health problems are overlooked due to more pronounced conditions like autism spectrum disorder what can be done to address this let me begin by unpacking that sentence a bit so the good news is that there's more awareness from the research and practice communities that co-occurring mental health needs are common experiences for individuals with autism across the lifespan from childhood through adulthood the reality is that it's also common that these mental health needs

14:40 may not be identified until later in childhood even adulthood for a few reasons the first one and something that's mentioned in that quote there it can sometimes be difficult to disentangle core autism symptoms like an insistence on sameness with co-occurring mental health needs like anxiety which can also be expressed in some forms as an insistence on sameness or rigid thinking second by diagnostic overshadowing i mean that core symptoms of autism can sometimes be perceived as more present or apparent and thus mask those other mental health care needs that a child or adult might experience and because of

15:26 this sort of masking this might lead a provider or care team to focus only on supporting access to autism-specific services like applied behavior analysis for example and potentially overlooking care for those mental health needs so what can be done well one way we're trying to address this is through attain so it's trying to increase attention to an awareness by providers entertainment primary care providers and really trying to emphasize that autism usually occurs and looks like autism plus the autism plus co-occurring mental health or physical health needs and that screening for co-occurring mental health needs is really important do you think it is important for mental

16:12 health clinicians treating patients with autism spectrum disorder have specialized training also what about primary care physicians would they benefit from training in autism spectrum disorder treatment legotain so in an ideal world yes to both however both mental health clinicians and primary care providers they're often required to be trained in ways that allow them to be more generous in their practice so they can serve the greatest number of people and when resources and time are limited it can be difficult to decide which areas to emphasize for specialized training from our work with attain and with other autism mental health interventions we've seen that children with autism can comprise a pretty significant proportion of the

16:59 clients or the patients who mental health providers and primary care providers see because of that probably a common occurrence for providers to be creating or working with individuals with autism it would be helpful for both mental health providers and primary care providers and they agree with this to have a foundational knowledge about what is autism what do co-occurring mental health presentations look like in individuals with autism and basic strategies maybe mostly kind of behavioral or even psycho-education to caregivers or the individual themselves about autism mental health needs and what kind of a care options might be available and some of the work that i was involved in prior to attain i was involved in a really community based mental health intervention

17:45 development process for outpatient mental health providers and this was called aim high that was that's the intervention's name and it was really in response to this understanding that because individuals with autism often comprising a significant proportion of a clinician's caseloads they were wanting more specialized skills and how to identify those current mental health needs how to adapt more traditional cognitive behavioral or behavioral therapies for individuals with autism so there is precedent and interest and need for this specialized training but with acknowledgement that these trainings they need to be in many ways brief and really fit within

18:31 the context of where care is provided so really what's most important is being responsive to stakeholder needs and working with them to create solutions that really fit their contacts and the families or individuals who they're trying to provide care to and i wonder if it's important to also at least provide some education to schools and school systems because isn't it true that with somebody who may have autism spectrum disorder it could become more apparent when there's a school change or more is required academically for them and so teachers and administrators and school psychologists also might benefit from some additional training am i right 100 right yes and so in fact for children with school-age children we

19:18 found that the most common pathway to them being to them accessing outpatient mental health services was because of a school concern the teachers or maybe the school psychologist someone at the school identified that there was a need you know often a challenging behavior that was interfering with the classroom or with the child's ability to participate in class and that was escalated to a referral for mental health assessment and so with aim high which is the intervention that we developed for community mental health clinicians we worked with school-based providers as well kind of acknowledging that it would be helpful to provide some of that specialized training to the school system and to the school

20:04 providers because they're a common and i think the most common provider of care to children and they can be some of those first-line interveners when they identify you know a need for children so absolutely you know engaging school-based providers and some of this training and awareness is really essential the challenge always is finding the time and the resources to be able to offer this training and the ongoing supervision to be able to maintain these kinds of interventions i agree and i also think that for them to understand that there might not be just an autism symptom but also other co-occurring mental health issue as well like they're not treating the patient but just to be aware of it i think would help them

20:50 to understand what type of referral would be needed absolutely so why is community engagement so important so ultimately community engagement it can facilitate better interventions better implementation of those interventions and long-term better sustainment of implemented interventions in my own work community engagement is really an essential element and it's core to the ethos of implementation science which is the broader field that my work is really inspired and moving into and so a key motivation driving implementation science is that effective treatments evidence-based treatments they often get stuck on their way to being offered

21:36 routinely in care that people have access to or trying to access so working with community members and stakeholders can significantly help reduce those step points and the earlier they're involved the community members parents patients providers the better there are several community engagement methods that i'm incorporating into my own work so one of them you heard a bit about was some of these co-creation methods with our community advisory board and with our tailoring of implementation plans with service systems other community engagement methods include developing or co-creating a theory of change with community members or stakeholders

22:22 something called pre-mortem brain writing and assessment of community engagement through survey and ethnographic or observational approaches so i'm i'm really excited about advancing community engagement methods more and more throughout my my future work community engagement it's hard work it's not for the faint of heart it's resource intensive but i've really only seen it pay off so and community engagement is something i'm very committed to in the work that i so we have all of these therapies that we know work that are oftentimes seen and implemented in research settings but you're trying to bring it into the community with of course the hard work that's needed but that's the most important thing but why aren't we doing it like what do you

23:08 think is a barrier of i know that it's hard work but i just think that implementation in the community setting is so important i 100 agree and oftentimes the pipeline for treatments and interventions to be developed is within a university research very tightly controlled setting and after there's a very rigorous and impressive oftentimes randomized clinical trial that's done to show if that treatment is effective oftentimes it ends there and then there's this expectation that okay we have this potentially life-saving evidence-based treatment it's now ready people can access it

23:54 there's a huge assumption and multiple gaps between this intervention that's been developed and how to actual you know real world providers and patients get access to it you know within implementation science that's kind of the whole motivation of that field and one of the key ways to overcome that you know intervention is developed and hopefully you know pray people come in and access it is to engage those implementers both the real world people and providers earlier in the intervention development process so that when you have you know evidence that something is effective it doesn't just get manualized and get put onto a bookshelf but it actually has legs and real world

24:42 providers are using it and providing it to patients who need it and i think clinicians when they start to see something really work can get excited about that yes absolutely and we know just from behavioral science too that if you have an investment in something if you've been kind of included on the way to something being developed that buy-in and engagement is reinforcing and so if you're able to include those clinicians those other providers as you're developing and kind of refining an intervention it's more likely that it's number one going to fit with their own skill development and practice but also it could lead to their longer term use of it because they've put in their input and their expertise that they've

25:28 invested in something dr stadnik is there anything that i didn't ask you that you think it's important for people to know about autism spectrum disorder one piece that we haven't dug into super deeply is emerging understanding and acknowledgement of the disparities faced by individuals from underserved communities this is not necessarily specific to autism but it's definitely been more pronounced when you look at age of diagnosis for people with autism access to care for individuals from underserved communities and that is something that i'm really deeply committed to trying to address as well be trying to ensure equitable access to diagnostic and to treatment

26:15 services for individuals with autism there's been some policy changes at the national level that have been helpful in trying to encourage you know universal autism screening to try to capture and identify individuals with autism from all racial and ethnic backgrounds earlier so that is heartening but definitely there's still more work to be done as it relates to equity and autism i agree and yes your work is very impressive we really appreciate it so dr stannuck what are you most excited about mental health treatment today i'm really excited that there are increasing national and really international efforts to promote health equity and mental health treatment research and practice so for a long time and even still today

27:03 mental health treatment has been subject to stigma as well as policy and systemic challenges that have really limited access and availability of mental health care for individuals and families i've been again excited to see that health care systems research funders like the national institutes of health and policy makers at the county and then local levels they're calling for or increasingly supportive of investing in research and practice efforts that promote access to evidence-based practices for those with mental health needs it can't come soon enough but i've i've seen progress over the past 10 to 15 years that i've been in the field so i think that's one piece i'm really excited about and if you had a magic wand and could improve one thing about mental health

27:48 treatment today what would it be i think i'd have to choose two but they're related that's okay so i think it would be related to both again equity and extended workforce capacity so equity through access languages offered stigma reduce information that's widely available and having trained providers and in workforce capacity so that second piece that i'd like to use my magic wand for is expanding capacity through diversifying the mental health provider workforce greater investment infrastructure building for community health workers family navigators spreading out the training to be able to provide care to individuals with mental health needs and with autism so

28:34 many times the frustration i've heard from providers and from parents and sometimes from individuals themselves is great i got a referral but i'm on a wait list now for a year or six months that's heartbreaking it can take so much effort and sometimes courage to be able to share about your mental health needs and then to have to wait for months to be able to get the care you need that's really tough to hear and so i think both the equity and the expanded capacity would be how i would use my magic wand because that could really change the trajectory like a year of waiting for treatment can change the whole trajectory of a person's course of illness yes it can and similarly you know with autism

29:21 diagnosis too we have great methods to be able to diagnose as early as 18 to 24 months the longer that it's a child's weight or has to be has to wait to be diagnosed if they have autism that's time wasted that they could have been them and their parents have been involved in you know behavioral treatment for example so absolutely time is of the essence when it comes to mental health care so dr stadnik on behalf of myself my listeners and all of the people that you've helped your work i want to thank you for your contributions to mental health treatment and for taking the time out of your busy schedule to help me and my audience better understand autism spectrum disorder thank you so much dr nash i really really appreciate the invitation to speak with you today and

30:08 appreciate your time as well thank you it was my pleasure so be sure to check out my website therapyshow.com which has many resources about mental health including a page dedicated to autism spectrum disorder there you will also find how to submit questions stories or insights that you have about the mental health system or suggestions about who else i can interview and how i can improve the show i'd like to close by reminding our listeners to please subscribe share and review this podcast so you someone you love and people around the world can gain more benefit from therapy there is no need to suffer in silence get the help that you need to create the life that you want

30:53 [Music] you