Editor's note: This text-based course is a transcript of the webinar, Mental Health In Aging Individuals With Intellectual And Developmental Disabilities: Insights And Strategies, presented by Christina Marsack-Topolewski, PhD, MSW, LMSW.
*Please also use the handout with this text course to supplement the material.
Learning Outcomes
- After this course, participants will be able to identify common co-occurring mental health conditions experienced by people with IDD.
- After this course, participants will be able to recognize characteristics, signs, and symptoms associated with mental health conditions and ways to promote wellness.
- After this course, participants will be able to list resources and organizations available to support individuals experiencing mental health challenges in order to support occupation.
Introduction
Thank you so much for having me here today, and welcome everyone. I appreciate your time, and I'm looking forward to our discussion. We’re going to be focusing on mental health and aging among individuals with intellectual and developmental disabilities. I want to take a moment to orient you to our topic and the structure of our time together.
As I mentioned, our focus will be on mental health, specifically within the context of individuals with intellectual and developmental disabilities, often referred to as IDDs. Toward the end of the session, I’ve included my bio and contact information for anyone wanting to reach out. I’ve also provided a link to my publications. I often joke that they can serve as good bedtime reading, but truly, they center on family caregivers of individuals with autism and other neurodevelopmental disabilities.
We all work in different settings, many of which involve individuals with IDDs. Considering these individuals holistically and addressing physical and mental health concerns is essential. Adults with IDDs are at increased risk of experiencing mental health conditions, and these may present in varied ways. Mental health is not static—it evolves with life experiences, transitions, losses, and joys. Conditions such as anxiety, depression, obsessive-compulsive disorder, and co-occurring realities are often part of the landscape. As individuals move through different life stages, their mental health needs may shift accordingly.
Over the years, I’ve worked as a special education teacher, a consultant, and in clinical social work. These roles have allowed me to see the ways mental health challenges manifest differently at various stages of life. While my research is primarily in autism, my work encompasses a broad range of related issues that impact individuals across the lifespan.
Agenda By Topic
Today, I hope we can focus on a few key takeaways. First, identifying common co-occurring mental health conditions experienced by people with disabilities. When I worked in K–12 settings, particularly with adolescents, I frequently saw autism paired with other mental health conditions. As these young people transitioned into adolescence, we observed how hormonal changes, academic demands, and even environmental shifts—like navigating a larger high school building—could influence their mental health. Understanding these changes helped us anticipate challenges and proactively support students and families.
Second, we should recognize the characteristics, signs, and symptoms associated with mental health conditions and how to promote wellness. This includes practical strategies for wellness promotion.
Finally, I always aim to leave participants with tangible resources. I know we have a national audience, which is terrific, and I’ve curated a list of organizations and tools that are broadly applicable across different regions. These can be especially useful for practitioners managing complex cases and may not have time to conduct in-depth research for each unique scenario. Some organizations I’ve consulted with have even included these resources in their family guides. Even though we all carry a mental toolbox of supports, having something concrete and readily accessible can be a tremendous asset.
As we proceed, I want to acknowledge the limitations and risks associated with this topic. Mental health is deeply complex, and there is no one-size-fits-all recommendation. This presentation aims to provide a foundational understanding of various symptoms, characteristics, and manifestations, not to offer prescriptive solutions. Each case is unique, and it's crucial to approach it with that mindset.
In my ongoing work, particularly consulting on adolescent cases involving individuals with IDDs, I’ve seen the value of strong multidisciplinary and interprofessional teams. When we collaborate effectively, we can offer robust, comprehensive services and make a difference in people’s lives.
Terminology
I want to take a moment to clarify some terminology early on, especially since we come from different professional backgrounds and training programs that may use varying language. When I use the term IDD, I’m referring to intellectual and developmental disabilities. When I say ID, I mean intellectual disabilities specifically.
I also think it's important to acknowledge the conversation around person-first versus identity-first language. There's been a noticeable shift in recent years regarding how we refer to individuals with disabilities, and this continues to evolve. Person-first language, such as "person with autism," "person with a disability," or "person with a mental health condition," places the individual before the diagnosis or condition. This approach emphasizes the individual's personhood.
On the other hand, identity-first language, such as "autistic individual," has been embraced by many in the disability community as a way to affirm disability as an integral part of identity. While there’s no universal consensus on which is best, the preferences can vary significantly from person to person and community to community.
I try to be intentional and balanced in my language, particularly when working directly with families and individuals with disabilities. I strive to match the language preferences of the people I’m serving, which is one way to show respect and foster a stronger, more inclusive dialogue. This nuance is important to keep in mind, and I share it here so we can all be mindful and respectful of the diverse preferences and perspectives around language in the disability space.
Common Co-occurring Mental Health Conditions Experienced by People With IDD
The first area I want to focus on today is the common co-occurring mental health conditions experienced by individuals with intellectual and developmental disabilities. From a broad perspective, the rates of co-occurring mental health conditions within this population are, unfortunately, relatively high. While we wish this weren’t the case, understanding this reality allows us to be more proactive in our approaches, especially during times of transition, which can be particularly vulnerable periods.
Most adults with IDD are living in the community, and many, based on the national sample from my research, are still living with their parents well into adulthood. In my studies involving adults with autism, defined here as age 18 and up, this living arrangement was the predominant pattern. This highlights the importance of community-based awareness and support systems. When we work directly with families and help them understand and manage these mental health realities, the impact can be long-lasting. I often say that supporting an individual with IDD inherently supports their caregivers, and vice versa. There is a symbiotic relationship in that dynamic, where improving one aspect can ripple effect on the others.
It's also important to note the challenges related to diagnosis and treatment. There are significant disparities in how mental health conditions are diagnosed and managed for people with IDD. Misdiagnosis is common, and in many cases, there is either no diagnosis or a lack of appropriate follow-up. Compounding this issue is the shortage of providers, particularly those with the experience and training needed to work effectively with this population. The barriers to receiving care are numerous—service navigation challenges, limited access to specialized providers, transportation issues, and scheduling difficulties all play a role in making care less accessible.
Another crucial factor to consider is the increased risk of abuse and neglect faced by people with IDD. This is a well-documented concern; although many instances go unreported, the risk remains high. I’m pleased to share that in Michigan, where I live, legislation was recently passed to help protect vulnerable adults, including those with IDD, from exploitation. This was the result of years of advocacy and collaboration, and it represents a significant step forward. But it's also a reminder that we must stay vigilant in recognizing trauma histories and acknowledging how past experiences may influence present behavior and mental health.
Processing challenges are another layer of complexity. Many individuals with IDD experience differences in processing speed and may struggle to understand or express emotions related to loss and grief. These emotional experiences are, of course, universal—everyone encounters loss—but the impact can be significantly magnified for someone with difficulty processing or communicating these emotions. As practitioners, we must consider how these factors shape behavior and well-being and adapt our approaches accordingly.
Key Considerations
There are a few additional points I want to emphasize regarding the trends and prevalence of mental health conditions among individuals with intellectual and developmental disabilities. One key reason for the wide range in reported prevalence rates is the nature of self-reporting, which is often central to how mental health data is collected. For this population, self-reporting presents particular challenges—communication difficulties, varying levels of insight, and inconsistency in caregiver reporting can all affect the accuracy and completeness of the information we receive. These factors make it challenging to paint a clear and consistent picture of mental health prevalence in this group.
Another critical issue is the heightened vulnerability to trauma experienced by individuals with IDD throughout their lives. This includes physical, sexual, and psychological trauma, all of which can have a profound impact on mental health. Unfortunately, these traumatic experiences often go undetected or unaddressed, particularly when trauma histories are not routinely screened or when individuals are unable to communicate their experiences. The lack of recognition and response to trauma further complicates accurate diagnosis and appropriate intervention.
It’s also important to acknowledge the rich diversity within the disability community. Disability is not a singular or uniform experience—individuals bring with them a wide range of cultural, racial, socioeconomic, and gender identities that intersect with their disability. These intersections shape how mental health conditions are experienced, perceived, and treated. Unfortunately, this complexity is not always fully addressed in research or clinical practice, yet it is essential for providing equitable, inclusive, and truly person-centered care.
When we think about individuals with autism, Down syndrome, or other conditions that fall under the IDD umbrella, we must also recognize the incredible variability within and across these diagnoses. A saying that has resonated deeply in the autism community is, “If you’ve met one person with autism, you’ve met one person with autism.” This captures the essence of the diversity we encounter—not only in behaviors and needs but in how those needs intersect with health and well-being over time. No two individuals are alike, and there is certainly no one-size-fits-all approach.
Accurately diagnosing mental health conditions in this population presents many challenges. One primary concern is diagnostic overshadowing, where symptoms of a mental health condition are mistakenly attributed to the individual’s intellectual or developmental disability. This can delay or prevent individuals from receiving appropriate care. Many of you may already be working to address and reduce this risk in your settings, and it remains a crucial area for continued awareness and improvement. Recognizing and responding to these challenges with sensitivity and precision is essential for advancing meaningful support and care.
Common Developmental Disabilities
Let’s examine some common developmental disabilities within the broader category of intellectual and developmental disabilities. I know many of you work in diverse settings, which is precisely what I anticipated, so I want to provide a framework supporting a shared understanding.
When we think about IDD as an umbrella category, several developmental disabilities commonly fall under it—conditions like autism, Down syndrome, cerebral palsy, and other congenital or acquired neurological conditions. In addition to these, we also need to be mindful of physical health conditions that are more prevalent in the IDD population. Obesity, diabetes, and congenital anomalies are particularly relevant. Considering how physical health is deeply connected to mental health is essential. These two areas are often intertwined, and challenges in one domain can significantly affect the other.
Another key issue I always try to raise is the distinction between visible and invisible disabilities. Visible disabilities—such as someone using a wheelchair, walking with a cane, or showing other physical signs—are more easily recognized. But when it comes to mental health or cognitive functioning, the signs aren’t always apparent. This can make diagnosis more complicated, not only for individuals with IDD but for anyone experiencing mental health challenges. The invisible nature of many mental health concerns is part of what makes detection and response so difficult.
In my work, this distinction is crucial because I often work with individuals who are at higher risk for developing mental health conditions, many of which begin to surface during adolescence. Whether it's autism, cognitive impairments, or other disabilities like traumatic brain injury, I try to stay aware of both the visible and less obvious indicators of distress. Communication and social abilities vary considerably within this population. In addition to that, we all, regardless of disability status, have different levels of comfort when it comes to expressing our emotions or disclosing mental health struggles. The stigma surrounding mental health continues to be a significant barrier to open conversation, making it even more critical to recognize subtle signs and build trusting relationships.
Current data suggest that approximately one in three individuals with IDD will experience a mental health concern at some point. Unfortunately, early signs and symptoms often go unnoticed. A recent publication highlighted this trend, offering a more up-to-date look at how widespread and under-recognized these issues remain. These are not distant statistics; they reflect current realities and emphasize the importance of early identification, increased awareness, and targeted support across settings.
Common Mental Health Co-Occurring Conditions
When we consider what’s common among co-occurring mental health conditions in individuals with IDD, we’re primarily talking about invisible disabilities. These include anxiety, depression, ADHD, obsessive-compulsive disorder, motor and vocal tic disorders, and eating disorders. Over the past 20 years working with individuals with disabilities, I’ve encountered all of these conditions, sometimes in isolation but often co-occurring. It’s not unusual to see someone with multiple diagnoses influencing the other uniquely.
Many of these conditions tend to cluster. For example, anxiety and ADHD frequently co-occur, creating a complex interplay that can profoundly affect how someone navigates daily life. Think about how anxiety can influence one's behavior—it affects emotional regulation, executive function, and the ability to engage meaningfully in daily routines. In individuals with IDD, these challenges can be amplified, and the behaviors we observe often serve as a form of communication. When we see an increase in challenging behaviors, especially in clinical or educational settings, we must pause and consider what those behaviors tell us. They may be signaling distress, discomfort, fear, or unmet needs.
In school environments, for instance, we often observe a variety of behavioral responses that arise in response to overstimulation, unmet needs, or difficulty with communication. These responses are happening within the context of a busy building filled with people, movement, and transitions—factors that can be overwhelming for many individuals with IDD, especially those struggling with anxiety. It’s not just the size of the space, but the level of sensory and social demands that can trigger reactions.
Anxiety, in particular, can present in ways that may not immediately be recognized as such. Individuals may develop specific or unusual fears, which can be difficult to rationalize or calm. These fears often persist and become deeply rooted, impacting the person’s ability to function in familiar environments or engage in typical routines. For those who have experienced anxiety or supported someone who has, you know how overwhelming and all-consuming it can become. It’s not just a passing worry—it can control a person’s thoughts and limit their ability to enjoy life.
That’s why it’s vital to help individuals connect with providers who can support them through behavioral therapy, counseling, medication, or a combination of approaches. If you are that provider, your role is critical. Your ability to recognize and respond to these mental health needs can be transformative, not only for the individual with the disability but also for their family, caregivers, and support network. Addressing these invisible but impactful challenges can open the door to greater stability, improved functioning, and a better quality of life.
Anxiety & Other Co-Occurring Conditions
When we think about how these different mental health conditions impact individuals with intellectual and developmental disabilities across the lifespan, it becomes clear that the effects are not isolated to one area—they influence multiple domains of life. These include work, social engagement, community participation, and relationship building. The ability to make and maintain friendships, to feel connected, to be part of a group or community, all of this can be deeply affected by conditions like anxiety, depression, ADHD, OCD, and eating disorders.
These conditions also have a significant impact on learning. Whether someone is in a formal educational setting or engaging in everyday learning opportunities, mental health plays a significant role in how information is processed, retained, and applied. I’ve always viewed the individuals I work with as lifelong learners, just like the rest of us. The goal is to continue growing, discovering, and developing across the lifespan. Mental health challenges can interfere with that process in school environments and job training, independent living skills, and other areas where learning continues throughout adulthood.
As I mentioned earlier, challenges in diagnosis are common. Taking anxiety and autism as an example, there is often significant overlap in symptoms, which makes differential diagnosis difficult. Is it a behavior rooted in the autism diagnosis? Or is it a manifestation of anxiety? Or is it both? These questions come up frequently, and the answers aren’t always clear. This uncertainty can delay or complicate effective intervention.
Diagnostic overshadowing is a significant concern in these cases. When someone has an existing diagnosis—especially an intellectual or developmental disability—there’s a tendency for professionals to attribute new or emerging symptoms to that original diagnosis, rather than exploring the possibility of a co-occurring condition. For example, in the ID population, we’re now seeing how overshadowing is impacting the diagnosis of dementia. Individuals with Down syndrome are at higher risk of developing dementia, and they often show symptoms earlier than the general population. However, these cognitive changes might not be recognized or appropriately diagnosed because of their existing ID diagnosis. The symptoms get lost in the background noise of the primary diagnosis.
The same issue arises with anxiety and depression. It’s not always easy to parse out what came first. Are we seeing symptoms of anxiety that are secondary to the stress of navigating the world with autism, or are we seeing anxiety as a standalone condition? This overlap complicates the diagnostic picture and makes it difficult to determine the best path forward for treatment. Understanding these complexities is crucial to provide thoughtful, accurate, and effective care.
Challenges: Anxiety and Autism
The other thing to think about that's been helpful in my work, at least, is the relationship with the sensory sensitivities and anxiety. Using autism as an example, it’s important to highlight how sensory sensitivities can contribute to heightened anxiety. Individuals with autism often experience the world through a heightened sensory lens, and this can make everyday experiences, like going to the dentist, significantly more stressful. The sounds, smells, textures, and physical sensations associated with dental visits can trigger a strong sensory and emotional response. Even the anticipation of the appointment—just thinking about going—can lead to increased anxiety. And while I greatly respect the dental profession (I come from a family of dentists), I also recognize that the dental setting is commonly associated with discomfort and apprehension for many people, not just those with disabilities. However, for individuals with autism and other developmental conditions, those anxieties are often compounded by sensory and communication challenges.
Beyond this specific example, anxiety can present in many different forms. In behavioral health settings, some of you may regularly encounter these manifestations. We often see ambiguous social fears—anxiety related to interactions or expectations that may be unclear or difficult to navigate. There are also uncommon specific phobias, which differ from more typical fears such as fear of heights or death. These phobias might seem unusual or unexpected, making them harder to identify and treat.
Some individuals develop what are known as special interest fears, which are unique and often linked to areas of intense personal interest. These fears can sometimes emerge in complex or surprising ways. Others may experience generalized anxiety disorder (GAD), where persistent worry and nervousness become a constant presence, regardless of the specific context.
Fear of change is another prevalent form of anxiety in this population. While change is often difficult for many of us, it can be particularly distressing for individuals who rely on routine and predictability to feel safe and regulated. Even minor transitions or unexpected environmental shifts can lead to significant distress.
Finally, there’s the presence of obsessive-compulsive disorder, which can manifest in ambiguous or less typical ways. Compulsions and intrusive thoughts might not always align with the more classic OCD presentations, and they can be deeply distressing and difficult to articulate for someone with communication differences. These variations in how anxiety presents further emphasize the need for individualized, compassionate, and flexible approaches to support and care.
Challenges: Physical Health
There are several important considerations to keep in mind when supporting adults with intellectual and developmental disabilities, particularly regarding the close connection between physical and mental health. This relationship is often overlooked, but it's crucial to recognize how physical health challenges can significantly influence mental well-being and vice versa.
Adults with IDD are more likely to experience non-normative or premature aging. These changes can occur earlier than in the general population, often overlapping with the typical aging process. While they may go through the same transitions as any aging adult, they also deal with additional or accelerated medical and functional changes. These experiences can create a layered set of challenges that impact quality of life.
From a medical standpoint, we commonly see a range of physical health concerns in this population. Dental pathologies, obesity, and both acute and chronic pain are frequently reported. Sensory deficits, including vision and hearing impairments, are also common. Some of these issues may be congenital, while others may develop over time. Osteoporosis is another vital condition to monitor, particularly due to the associated increased risk of fractures. In collaboration with colleagues at the University of Michigan, we’ve observed this heightened fracture risk firsthand, which warrants careful attention.
At the same time, we must also consider the vital role of caregivers. Many caregivers juggle multiple responsibilities, including medical appointments, behavioral support, and long-term planning. Their well-being is directly connected to the well-being of the individual they support. When we consider the whole picture—an adult with IDD managing complex health issues and a caregiver navigating those needs alongside their own—it becomes clear how deeply interconnected these experiences are.
Recognizing these physical health issues and their impact on mental health can guide us in creating more comprehensive, person-centered care strategies. It also reinforces the importance of integrated care models that consider the whole person, their support system, and the many facets of aging with a developmental disability.
Challenges: Aging
There are several important factors to consider across the lifespan when supporting individuals with intellectual and developmental disabilities, whether they are very young or well into adulthood. One of the most consistent themes is the impact of increased stress. Stress, in any form, can be a major trigger for both physical and mental health challenges. While this may not be surprising, it’s always worth reiterating—seeing it laid out can serve as a reminder of what might be contributing to someone’s current presentation or overall health status. If you want additional reading, I’ve cited relevant literature to support this.
Loss and the ability to process loss are also significant factors. For individuals with IDD, communicating or fully understanding a loss can be highly challenging. On the other side of that experience, I work extensively with family caregivers who themselves are navigating new realities, including their aging process or health conditions. These changes directly affect their capacity to provide care. I speak from personal experience, too—I recently had my third baby girl. She’s a sweet baby, thankfully much calmer than my last two, who had feeding issues and spent a good deal of their early days crying. As any parent knows, caregiving when exhausted is hard, and unless additional supports are brought in, that fatigue can impact the care being provided. This applies to families of individuals with IDD as well.
Social isolation and loneliness are significant concerns, not only for individuals with IDD but also for their caregivers. These issues can take a toll on both mental and physical health. Even something as simple as offering a resource, suggesting a support group, or connecting a family with another going through a similar experience can have an enormous impact. In the K–12 settings I’ve worked in, we’ve often seen great benefit in connecting families of children with rare or complex disabilities. Hence, they have someone to talk to who truly understands their situation.
This is why I want to highlight a significant public health concern that has gained attention recently. The U.S. Surgeon General released a report identifying social isolation and loneliness as critical health issues. Research now shows that being isolated—even without feeling lonely—can have the same impact on physical health as smoking daily. This connection underscores the importance of considering social factors in any discussion of mental health, especially for individuals with IDD, who are often more likely to experience isolation due to mobility, communication, or support limitations.
I’ve been informally studying this issue over the past few years, and what I’ve found—corroborated by decades of data—is a steady trajectory of increasing isolation in the U.S. over the last 60 years. This trend should give all of us pause. Isolation affects mental and physical health outcomes, such as cardiovascular health, immune function, and longevity.
In a recent article I co-authored with Dr. Preethi Samuel here in Michigan, we noted a decline in both activities of daily living (ADLs) and instrumental activities of daily living (IADLs) among adults with IDD. While many students with disabilities may experience gains in independence during their school years, particularly when supported by structured educational programs, these gains often decline once they transition into adulthood. This loss of independence affects the individual and their caregivers, who may experience greater burden and stress.
Supporting individuals to maintain as much independence as possible has a positive ripple effect. It benefits the person receiving care and their caregivers. Those small milestones matter, whether it's learning to cook simple meals, manage personal hygiene, or participate in meaningful social interactions. I’ve spent much of my work examining caregiver quality of life, caregiver burden, and how we can build support systems that genuinely uplift the entire family unit.
Lastly, it's essential to consider the unique contextual factors that shape the lives of people with IDD. For example, the inability to drive can significantly limit access to employment, education, or social participation. These barriers create layers of restriction that many people don’t encounter, and they must be considered when developing supportive and inclusive interventions across the lifespan.
Relationship Between Physical & Mental Wellness
I want to return to this fundamental connection between physical health and mental wellness because it’s integral to everything we’ve discussed. I remember attending a talk in graduate school at the University of Michigan, hosted by the medical school. I was doing my best to pay attention—though I’ll admit the food was excellent—but one thing from that session has always stayed with me. The speaker, an MD and a PhD, made a simple but powerful point: if we can help our clients exercise—at the time the example used was running—we can reduce their anxiety.
Although that talk wasn’t specifically focused on individuals with IDD, the principle is applicable. The benefits of physical activity on mental health are well-documented. Engaging in movement reduces anxiety, improves mood, supports executive function, and enhances overall well-being. It’s one of the most accessible and effective interventions we can encourage, yet it’s often overlooked, especially in populations with complex needs.
Another striking point from that same talk was the assertion that people live longer, but often in more degenerative states. That statement has continued to resonate with me in my consulting work. It’s a reminder of why we must think holistically—supporting individuals not just to live longer, but to live well. That means considering the interplay between physical activity, emotional regulation, social engagement, and self-care in a comprehensive and integrated way.
When individuals feel better physically, they are often more receptive to mental health interventions and more capable of engaging in their environments. Likewise, when someone’s mental health is supported, they are more likely to be motivated to move, connect, and participate. It’s a two-way relationship, and both sides of the equation matter. This approach allows us to build more effective supports rooted in the whole person, not just their diagnosis, but their goals, preferences, and overall quality of life.
Other Key Considerations
I want to highlight some key challenges that are important to remember briefly. While I’ve mentioned several of these earlier, revisiting them through a more integrated lens is helpful. Physical health remains a core consideration, and we can’t talk about mental wellness without addressing factors like sleep hygiene, nutrition, and routine. These physical components are often interdependent with mental health and can either support or undermine a person's overall well-being.
Family involvement and the support they provide are also essential. Families are often the backbone of care, especially for individuals with intellectual and developmental disabilities, and their capacity to provide consistent, informed, and compassionate support can significantly shape outcomes. Supporting caregivers in their role—whether through respite services, education, or connection to resources—is as important as the direct support we offer individuals.
Communication plays a central role in all of this. One of the things I always prioritize when working with individuals is ensuring that the language I use reflects their preferences and communication style. There’s a fundamental difference between language that is technically correct and language that is personally meaningful. I recall a time when I was working with an adolescent with significant autism. I had developed a behavior plan using standard clinical language, but it quickly became clear that the terminology didn’t resonate with him. So I revised the entire plan, using his words and phrases—language he used to describe his experiences and needs. That made all the difference in helping him engage with the plan and feel understood.
This experience reminded me that the effectiveness of our work is not just about professional accuracy—it’s also about connection. Our language is only as functional as it is accessible and relatable to the people we support. If it doesn’t make sense to them, we’re missing an essential piece of the puzzle. Communication, like care, must be individualized, respectful, and centered on the person we support.
Recognizing Characteristics, Signs, and Symptoms Associated With Mental Health Conditions and Ways to Promote Wellness
Let’s talk briefly about the characteristics, signs, and symptoms associated with mental health. Knowing these can serve as a refresher, a reminder, or a learning opportunity. It’s often a way to check in with myself and ask, “What do I need to keep looking for?” Recognizing these signs helps me stay attentive to what might happen, especially when working with individuals who may express their needs differently.
Recognizing Signs and Symptoms of Mental Health Challenges
There are both outward and inward signs to be aware of when identifying symptoms associated with mental health conditions. We know individuals communicate at different levels; for some, verbally articulating their feelings is possible and incredibly helpful. I’ve worked with many individuals with IDD who can tell me things like, “I’m feeling sad,” or explain events that have upset them. Communication may look different for others, and we must observe more subtle or behavioral indicators. It’s often about tuning into verbal and nonverbal cues to understand what’s going on fully.
Sleep is one area I always highlight. Both in my clinical work and in the research, we know that many individuals with IDD struggle with sleep, whether that’s insufficient sleep, frequent waking, or irregular patterns. These disruptions don’t happen in isolation; they impact mental health, eating habits, energy levels, emotional regulation, and general day-to-day functioning. Sleep hygiene is a critical area that’s often overlooked but significantly impacts mental wellness.
Some key things to look for include the ability to verbalize feelings of sadness, apathy, worry, or fear. When someone is verbal and expresses these feelings, it’s a red flag and a strong indicator that additional support may be needed. When I hear these kinds of statements, it immediately prompts me to think about what might need to change and how we can provide support.
Another significant sign is when someone verbalizes that life feels worthless. In my visits to over 100 group homes and semi-independent living settings for adults with developmental disabilities, I’ve asked residents about their lives, their care, and how they feel about their environments. Occasionally, these types of comments emerge, even when I haven’t asked directly about mental health. This is especially common around emotionally intense times like holidays, which can evoke grief, loneliness, or memories of loss. I’ve worked with individuals who have very acute memories of events like a parent’s death or hospitalization, and these anniversaries can feel just as raw years later. These moments can be deeply triggering.
Other signs to watch for include withdrawal, difficulty getting out of bed, and changes in sleep or hygiene routines. Shifts in mood, temperament, or energy levels also signal that something may be going on. Even more subtle changes, like increased irritability or decreased interest in food—or on the flip side, preoccupation with eating—can point to larger mental health concerns. Eating disorders, in particular, are increasingly recognized in the IDD community, especially among those with autism.
Substance use, atypical thoughts or perceptions, and expressions of self-harm are also serious concerns. In addition, difficulties with focus or concentration, while sometimes overlooked, can be important indicators of emotional distress. In my work, attention and engagement are helpful markers for a person’s broader emotional state.
Finally, safety always has to be part of the conversation—both for the individuals we support and for caregivers, providers, and families. I’ve done a lot of work educating both staff and families on how to spot these early warning signs and respond in ways that are both supportive and proactive. Understanding mental health symptoms from a behavioral perspective and sharing that insight with those who provide daily care can be a powerful step toward better outcomes and healthier lives.
Other Signs and Symptoms of Mental Health Challenges
Behavioral problems are often a form of communication—an attempt to meet needs when other avenues might not be available or effective. That’s typically what we see, whether the behavior is about seeking attention, obtaining something tangible, escaping a situation, or expressing discomfort. Considering these motivations within the broader context of a person’s well-being is essential. Rather than labeling the behavior as “challenging,” I try to ask what it’s communicating and how I can respond in a supportive way.
In my direct work with individuals, I’ve spent a lot of time observing behaviors that may indicate emotional or mental distress. For example, is someone pacing more than usual? Is the pacing different in intensity or frequency? Are they engaging in repetitive movements like hand flapping, and is it new or more frequent than before? These physical behaviors can signal agitation, stress, or heightened emotional states.
Changes in vocal expression are another critical area I monitor. Is someone speaking more rapidly than usual? Has their tone or volume changed? Are they talking in a way that seems excited and happy, or does it suggest they are agitated or distressed? Shifts in the rate or tone of speech can reveal much about someone’s internal state. In moments of stress, I’ve worked with individuals who begin to verbally relive a difficult or perceived threatening event, speaking aloud to themselves to process or make sense of the experience. I’ve often observed accompanying signs like pacing, clenched hands, or rapid breathing in these instances.
It’s also essential to remain alert to behaviors that could result in physical harm, whether to the individual or others, even when there’s no apparent intent to cause harm. Safety is always a top concern, and spotting early signs of dysregulation can allow for timely and effective intervention.
Facial expressions and affect can offer additional insight, although they can sometimes be challenging to interpret. For some individuals, facial expressions are a reliable indicator of their feelings. For others, there may be a disconnect between their internal emotional state and outward expressions. Despite this, paying attention over time helps build an understanding of that person’s typical patterns and cues. Often, combining what we observe behaviorally with what we hear in someone’s voice and what we know about their baseline behavior gives us a fuller and more accurate picture.
These observations are critical in guiding my response. They help me craft strategies grounded in empathy and respect for each individual’s communication style and needs.
Tips for Enhancing Mental Health & Wellness
I’ve gathered a handful of tips that I’ve used in my own work and that I consistently remind myself of—especially when things feel hectic or overwhelming. First and foremost, I try to return to the basics. Working as part of a collaborative team can be incredibly helpful, and when that team has synergy and longevity, the impact is even greater. The skills each of you bring to this work are deeply needed, perhaps more now than at any other point in my career. With ongoing shortages in health and behavioral health providers, effective teamwork and communication have never been more important.
The foundational strategies I return to include encouraging adequate sleep, maintaining consistent routines, and ensuring access to appropriate nutrition and hydration. While these may not always be our direct responsibility, they are areas where collaboration, referrals, and gentle reminders to families or support staff can make a meaningful difference. Exercise is also essential for mental health, whether through structured programs or informal opportunities like movement breaks, wheelchair walks, or chair yoga. If this isn’t within your direct role, connecting individuals with resources in their community can still be a valuable contribution.
Fun and creativity matter just as much. Creating opportunities for joy, humor, and connection can have therapeutic effects. Laughter, as cliché as it may sound, offers real benefits. Addressing social needs remains essential. A person doesn’t need to feel lonely to experience the physical and emotional effects of isolation. Supporting connection in meaningful and accessible ways—whether through peer support, community integration, or structured social activities—can make a big difference.
When it comes to promoting mental wellness, it helps to recognize when a situation presents a teachable moment and when it doesn’t. Communication supports are also crucial. Even if someone doesn’t typically use picture exchange systems or written prompts, I’ve found that simple visual supports can be incredibly effective in moments of distress. In one case, an individual who usually communicated well was overwhelmed, and verbal language wasn’t working. I wrote down a few bullet points, which helped clarify and calm the situation. Since then, I’ve used this approach in many different contexts. Slowing things down with simple written supports can provide a pause to regain composure and focus.
Calming techniques—especially those built into daily routines—can also be powerful. In a school, outpatient setting, or residential program, encouraging consistent use of self-regulation strategies can build confidence and support long-term well-being. Modeling can be effective for some, especially when it demonstrates coping strategies or sequences of steps in a task. While it doesn’t work for everyone, many individuals with IDD benefit from watching others go through a process, especially when the model narrates what they’re doing and why.
Routines are often critical. The individuals I’ve worked with tend to thrive with predictability and calm. Visual supports help reinforce those routines and provide clarity throughout the day. I’ll admit, even I rely on visual reminders. Just the other day, I told my daughter’s preschool teacher I’d see her next week—on a Tuesday—forgetting entirely that I’d be back the next day. Life gets busy, and a little humor reminds us that structure helps all of us. For people with IDD, it can be the key to feeling grounded and capable.
Technology can also be a valuable support tool when used intentionally. In my work, we use it to reinforce routines, provide reminders, and support communication. The key is ensuring it’s used in a balanced way. Overreliance can be harmful, so thoughtful use, with appropriate boundaries and monitoring, is essential. When integrated with care, technology can enhance autonomy, increase access to supports, and meaningfully bring structure and connection into someone’s daily life.
Additional Tips for Enhancing Mental Health & Wellness
Additional tips that I’ve found valuable—both in practice and reflection—include using concrete information, literal language, and maintaining a calm, grounded approach. These strategies help create predictability and clarity, which can be incredibly reassuring for individuals with IDD. One area I’ve had to learn and relearn—often with each individual I work with—is the importance of allowing the appropriate wait time. Processing needs can vary significantly from person to person and even from moment to moment within the same day. Someone may process information more quickly in the morning than in the afternoon, or vice versa. Being mindful of that and giving space for processing has been one of the most powerful tools in my work.
There’s substantial literature supporting each of these strategies, but beyond the research, they’ve proven time and again to be practical and impactful. Finding ways to build connections and promote community involvement is another critical component. Supporting opportunities for lifelong learning, activity, and generativity matters deeply. We all need purpose and meaning in our lives.
For those familiar with Viktor Frankl, he was a physician and Holocaust survivor who later earned a PhD and authored Man’s Search for Meaning. He developed logotherapy, which centers on helping individuals find purpose as a means of healing. His core message—that human beings need meaning, something to live for—is just as relevant to our clients with IDD as it is to anyone else. I think about that often when working with individuals who feel disconnected or aimless. In many residential settings I’ve visited across Michigan, I’ve heard individuals express a desire for connection, engagement, and purpose. When those needs go unmet, it can manifest in withdrawal, frustration, or behavioral changes.
Supporting individuals in identifying what gives their life meaning—whether it’s a role, a relationship, a routine, or a goal—can be transformative. This applies equally to families and caregivers. Everyone benefits when there’s a sense of shared purpose and connection.
Another practical strategy involves helping individuals better understand their internal states. It can be empowering to teach someone to recognize when they’re beginning to feel frustrated, anxious, or overwhelmed. It allows for earlier intervention and builds self-awareness. This can be done through simple check-ins, visual tools, or routines that help gauge “internal temperature,” which I’ve found helpful for the individual and their support team.
I also want to revisit the four functions of behavior, which offer a helpful framework when analyzing actions that may be difficult to interpret. These include behaviors motivated by sensory needs, escape or avoidance, attention seeking, or access to tangible items. Understanding these functions allows us to better interpret and respond to what someone may be trying to communicate through their behavior. When we identify the “why” behind a behavior, we can react with respectful and practical strategies, supporting the individual in a way that feels validating and constructive.
Understanding the ABCs/Notetaking/Benefits of Providers
What I look for in these situations are the ABCs—antecedent, behavior, and consequence. The antecedent is what happened right before the behavior, the behavior is what we observe, and the result follows. These elements can be challenging to pinpoint, especially when things move quickly or multiple variables are at play. But even when it’s difficult, I’ve found that doing the detective work—pausing to examine these patterns—can be incredibly helpful, especially when working as a team.
Writing things down can be a powerful tool in these situations. It lets us capture details we might otherwise forget and gives us a shared reference point when discussing patterns and planning interventions. Each of you plays a critical role in this process. Whether you support individuals in clinical, educational, or community settings, your observations and insights are vital. With individuals who have IDD, your work contributes directly to promoting their overall health and wellness. Identifying and understanding these behavioral patterns within the ABC framework strengthens our ability to offer compassionate, tailored, and effective support.
Resources and Organizations Available to Support Individuals Experiencing Mental Health Challenges
I want to briefly share a few resources and organizations I’ve noted here. These include local, state, and national supports, and I’ve included in-person and virtual options. Virtual support groups, in particular, can be incredibly beneficial for individuals who cannot physically access services but could still benefit from community, guidance, or emotional support. This is true not just for individuals with IDD but also for their family members and fellow providers. These community-building tools can make a significant difference in navigating daily challenges or simply feeling less alone.
I’m reminded of a case I worked on involving an individual with very early-onset schizophrenia. Her family was navigating a series of shifting diagnoses based on age and clinical presentation. One of the most impactful interventions wasn’t clinical at all—it was connecting her parents with another family of the same cultural background who had gone through something similar. That connection made a harrowing and isolating time feel just a little more manageable. These types of family-to-family connections can be powerful and transformative.
Depending on the community and available providers, there are also several individual and group counseling options. I’ve included organizational resources with clickable links that may be useful to share with families or colleagues. If this isn’t your direct work area, these resources can still be helpful. I always make it a point to include mental health supports—such as the National Suicide Prevention Lifeline and the Crisis Text Line—and I’ve also included services for those who are deaf or hard of hearing.
Summary
As we wrap up, I want to underscore the importance of helping individuals develop strong self-care and wellness routines. This might not be your exact role, but sometimes simply sharing a helpful resource or pointing someone in the right direction can be life-changing. Wellness practices often need to be explicitly taught and highly individualized. What helps one person feel regulated, grounded, and joyful may look very different for someone else. Especially in the IDD population, providing individualized teaching and support can open doors to greater independence and fulfillment.
I often return to the quote, “Give a man a fish, and you feed him for a day. Teach him to fish, and you feed him for a lifetime.” This sentiment rings especially true for the populations we support. Empowering individuals with the tools they need to navigate their world makes a lasting impact.
Thank you so much for your time and engagement. I’ve included my email here if anyone wants to reach out. I’ve also provided a link to my LinkedIn profile, where I sometimes share publications and updates, and my Google Scholar page for those interested in accessing articles I’ve referenced. Please don’t hesitate to reach out if I can ever support or assist.
Exam Poll
1)One in ____ people with IDD experience a mental health concern.
2)Common co-occurring mental health conditions among adults with IDD include which of the following:
3)Which of the following factors impact mental health and overall wellness?
4)Which of the following is a mental health challenge sign and symptom to be aware of?
5)Strategies to enhance mental health and overall wellness include:
Questions and Answers
Can you elaborate more on “not feeling lonely but being socially isolated?”
Yes, this is a fundamental question and one that often comes up in discussions around mental health and community connection. Social isolation and loneliness are related, but they’re different. Someone can report that they don’t feel lonely while still socially isolated, meaning they lack meaningful social contact or engagement with others. This might be due to limited access to community spaces, barriers in transportation, communication challenges, or a lack of inclusive opportunities to connect.
For many individuals, particularly those with intellectual and developmental disabilities (IDD), verbalizing feelings of loneliness may not come easily—or at all. Even among individuals without disabilities, loneliness can be hard to identify or articulate. Concepts like “feeling connected” or “being part of something” are abstract and difficult to express. So, someone may not report feeling lonely, yet if they are not engaged in reciprocal relationships or stimulating social environments, they may still be experiencing the harmful effects of isolation.
And those effects are significant. Social isolation has been strongly linked to a range of adverse mental and physical health outcomes. Studies have shown that isolation impacts everything from emotional regulation to cardiovascular health, immune functioning, and life expectancy. The U.S. Surgeon General has highlighted social isolation and loneliness as a significant public health concern, with physical impacts equated to smoking daily.
About 60% of the general U.S. population reports social isolation or loneliness. When we consider the IDD population, both empirical data and anecdotal evidence suggest that the percentage is likely even higher, likely due to the combination of systemic barriers, reduced access to inclusive activities, and communication or mobility limitations. This underscores the urgent need for more community-based opportunities, accessible supports, and intentional efforts to build meaningful social connections for individuals with IDD.
So even if someone says they don’t feel lonely, looking at the bigger picture is essential: Are they connected? Are they engaged? Do they have opportunities to participate, contribute, and be seen? Because those are the pieces that help protect and promote long-term mental and physical wellness.
References
See additional handout.
Citation
Marsack-Topolewski, C. (2025). Mental health in aging individuals with intellectual and developmental disabilities: Insights and strategies. OccupationalTherapy.com, Article 5804. Available at www.occupationaltherapy.com
