Working with adults with developmental disabilities

As more individuals with intellectual and developmental disabilities (IDD) live well into adulthood, they may cope with an array and degree of mental health challenges that far outstrip the supply of specialized mental health clinicians, including psychologists. Anxiety disorders, depression, and suicidal thoughts—along with life’s more routine emotional challenges—all can impact adults living with IDD. In some cases, their vulnerability may be greater. One recent study, which looked at suicide trends in Utah, found that deaths from 2013 to 2017 were more likely among those living with autism spectrum disorder (ASD) compared with those without an ASD diagnosis (Kirby, A. V., et al., Autism Researchopens in new window, Vol. 12, No. 4, 2019).

“This population [of adults with IDD] is so underserved, there is such a need,” said Lisa Neitzke, PhD, BCBA, a psychologist who practices at the Adult Intellectual/Developmental Disabilities Behavioral Health Clinic at the University of Nebraska Medical Center’s Munroe-Meyer Institute. “There’s not many psychologists who have a lot of experience working with people with developmental disabilities.”

The access difficulties start with limited training opportunities for psychologists, said Marc Tassé, PhD, a professor in the Department of Psychology at The Ohio State University, which has one the few U.S. graduate programs that offers training in working with individuals with IDD across the life span. Reimbursement rates don’t help, Tassé said, noting that these adults often are covered by Medicaid and their treatment can require a lot of time. “The payment may not be at a level that these professionals want for the time they put in.” Plus, he added, many of them “refuse to see individuals with an intellectual disability because they don’t feel comfortable with the developmental condition.”

But Tassé and other psychologists who work with these adults maintain that, given the access gap, more psychologists need to step up even if it’s to treat patients only occasionally. To provide the best care, psychologists may need to consult with a trained colleague by getting a referral through organizations such as the National Association for the Dually Diagnosedopens in new window (NADD). They may need to adjust their time frame and approach depending upon the patient’s cognitive level and other challenges. They should also strive to avoid missteps that erode building trust and rapport, such as interacting primarily with a family member or caregiver, he said.

Still, the broader framework of cognitive behavioral therapy and other treatment regimens apply for adults diagnosed with autism, Down syndrome, and other types of IDD, said Neitzke, also an assistant professor in the Department of Psychology at the University of Nebraska Medical Center. “Know that you have a strong skill set and that a lot of the training that you have working with neurotypical adults does generalize to the IDD population,” she said.

“You might have to make a few adaptations, but you have the skill set, you know the content, you know the strategies to utilize. Then it’s more of refining the art of the therapy.”

The National Institutes of Health defines intellectual and developmental disabilities as disorders that usually begin at or shortly after birth and can impact the lifelong trajectory of someone’s physical, intellectual, and emotional development. Trends indicate that more adults will be living with some type of IDD in the years to come, according to a recent analysis of federal dataopens in new window for children ages 3 to 17 years.

From 2015 to 2017, 17.8% of children had been diagnosed with some type of disability, including attention-deficit/hyperactivity disorder (ADHD) autism spectrum disorder, intellectual disability, and cerebral palsy, among others. This is 1.6 percentage points higher than 2009 to 2011, when 16.2% of children were diagnosed with some type of disability (Zablotsky, B., et al, Pediatricsopens in new window, Vol. 144, No. 4, 2019). The study didn’t look at underlying causes, but the overall increase, driven in large part by higher percentages of children diagnosed with autism or ADHD, may reflect improvements in awareness and better access to health care, the authors wrote. While study findings vary, broadly speaking, one third to one half of children and adults with IDD also meet criteria for at least one mental health condition, said Sigan Hartley, PhD, a past-president of APA’s Div. 33 (Intellectual and Developmental Disabilities/Autism Spectrum Disorder) and an associate professor in human development and family studies at the University of Wisconsin–­Madison. They also may be coping with one or more comorbid behavioral challenges, such as repetitive behaviors or inattention, said Hartley, whose research and other work focus on adolescents and adults with IDD. “You often get a complicated profile of mental health and behavioral problems,” she said.

Recent findings also indicate some overlap between disability and gender identity. One study, which looked at five data sets involving a total of more than 600,000 people, found that those individuals who identified as transgender or gender diverse were 3 to 6 times more likely to be diagnosed with autism than those who were cisgender (Warrier, V., et al., Nature Communicationsopens in new window, Vol. 11, 2020).

To screen and assess adults with IDD, various tools are available, such as the Reiss Screen for Maladaptive Behavior (to identify challenging behaviors), the Psychiatric Assessment Schedule for Adults with Developmental Disabilities (PAS-ADD) Checklist, and the Achenbach System of Empirically Based Assessment (ASEBA). But more education must be done so that psychologists, social workers, case managers, and other front-line workers who work with these adults are aware of the tools, Hartley said.

Another consideration, in terms of identifying mental health issues, is that the symptoms may present differently than those defined in the traditional Diagnostic and Statistical Manual of Mental Disorders (DSM), depending on the IDD, Hartley said. A helpful guide, the Diagnostic Manual—Intellectual Disabilityopens in new window, can educate clinicians on some of those, she said.

For instance, adults with Down syndrome may not verbally express thoughts that indicate signs of depression, Hartley said. Instead, they may become more irritable, she said. They may get into arguments with coworkers more often or not want to socialize with roommates. “Things may be stressing them out more than they used to.”

Psychologists should also guard against the potential for diagnostic overshadowing, Tassé said. “They may think that [the patient] cries a lot or he’s anxious a lot because he’s got autism or because he’s got an intellectual disability,” he said. “When in fact it’s a separate condition that needs to be treated separately, as you would any other mental health condition.”

Studies highlight the gap between the need for mental health services and their availability. One study, published in 2019 and based on an online survey of 200 adults with autism living in the United Kingdom, was bluntly titled “People Like Me Don’t Get Support” (Camm-Crosbie, L., Autismopens in new window, Vol. 23, No. 6, 2019). Nine out of 10 of the 200 adults surveyed reported a mental health diagnosis, most frequently anxiety or depression.

Karyn Day sought a psychologist’s help for her 26-year-old son with autism in late 2020 after watching his anxiety significantly ramp up amid the pandemic. The family tried to shield him from COVID-19 news, but her son spends a lot of time in front of the computer, making that infeasible, she said.

Immediately prior to the pandemic, he was working part time and didn’t need to see a psychologist, said Day, who lives in Missouri. By late last year, “he was having anxiety attacks within our house,” she said. “I was trying to figure out how to help him. I knew it was beyond what I could do.”

But Day felt like she was almost searching blindly as she worked her way down the list of insurance-covered providers. When her son was younger, there were social media message boards and other resources for parents of children with autism to identify expert clinicians, she said, options that seemed to vanish once her son reached adulthood. After a battery of phone calls, Day located a local psychologist who had an opening and some experience with autism.

As therapy progresses, psychologists can adjust their approach to best align with the patient’s cognitive level and thinking style. When working with an adult who has autism, Neitzke may refrain from using more abstract concepts or metaphors, given the tendency toward more concrete thinking. Breaking down the recommended treatment into steps also can help, said Tassé, along with using a multisensory approach, perhaps combining visual aids with verbal instructions.

For example, for adults with autism trying to ease anxiety, a reminder can be set on their phones that signals when it’s time to practice their relaxation exercises, Tassé said. Other specific cues can be set, such as stopping to practice again if their smartwatch alerts them that their pulse has exceeded 110 beats a minute outside of the gym, he said. “A lot of these strategies work for everybody,” he noted, “but they are particularly important for adults with autism.”

With patients who have intellectual disabilities, Neitzke may spend the entire session working on a single skill, such as learning a deep-breathing technique to relax. Often, a family member or caregiver may join for part of that session, and Neitzke sometimes uses that as a teaching opportunity. “I might tell [the patient], ‘Can you show your mom what we talked about today?’ That helps me verify what they understood.”

Be sure to hold adults with IDD accountable for making progress, just as with any other patient, Tassé said. If the patient struggles with social anxiety and the goal is to invite a friend to a restaurant and that doesn’t happen, discuss why, and then brainstorm strategies for success before the next session, he said. “If you think that they are able to do this and that’s what you expect them to do, when they come back, they have to have done it,” he said.

Above all, when working with adult patients with IDD, such as those with Down syndrome, interact with them directly as much as possible rather than talking mostly to their family member or caregiver if treatment includes a partner or an advocate, Hartley said. This even involves little things like positioning your body facing more toward them, she said. “Ask, ‘How have you been feeling? What it’s been like to go to work? Has it been hard to get up in the morning?’”

It may take longer to get some of those details, Hartley said. “But it’s important to make sure that you have their buy-in and are engaging with what’s going on from their perspective,” she said, thus empowering them in the treatment process.

Also, language can be very powerful, Hartley said. Consult with others in the field and, as appropriate, talk with the patient about their preferences and views, she said. For example, some patients may prefer identity-first language, such as describing oneself as “an autistic adult,” while others may prefer person-first language, such as describing oneself as “an adult with autism,” and still others may have an entirely different preference.

During therapy, try to gain some insight into how the patient spends their time, Hartley suggested. Not all activities are equally beneficial in terms of promoting psychological well-being, said Hartley, who has conducted some related research looking at leisure activities in adults with Down syndrome (Intellectual and Developmental Disabilitiesopens in new window, Vol. 55, No. 2, 2017).

Adults with IDD should be encouraged to develop routines that involve more stimulating pursuits, such as regular exercise or opportunities to interact with others, Hartley said. A routine of swimming several times a week at the YMCA, for example, combines both physical activity and social components, she said. “We know that being around people and interacting tends to make us often feel better and have a more positive affect.”

Assessing and discussing a patient’s daily activities is particularly relevant now, given that the pandemic has disrupted jobs, programs, and other outlets, Hartley said. Day echoed that sentiment, saying that her son’s employer halted his part-time data entry job, eroding some of her son’s weekly structure and, she thinks, potentially amplifying his anxiety. “He loves the job,” she said. “He misses it terribly.”

Goal-setting also should be a routine part of therapy for adults with IDD, said Karrie Shogren, PhD, a researcher who directs the Kansas University Center on Developmental Disabilities. “They don’t always have the same opportunities to be involved in identifying and expressing the things that they want in their lives,” said Shogren, a past-president of APA’s Div. 33. “[Other individuals] may have more of a say in where they live, where they work.”

The idea is to help the patient facilitate their own person-centered planning, Shogren said. Ideally, these sorts of self-directed conversations, including creating a related action plan, should begin in adolescence or even earlier. “We want the person to be able to be actively engaged in making things happen, rather than things happening to them,” she said. “Because that’s where the empowerment and other pieces that are so important come from.”

In the end, the goals themselves aren’t any different than for adults without IDD, including pursuing a healthy life, developing social and romantic relationships, and finding an enjoyable job, Shogren said. “It’s all of those things,” she said, “it’s just the barriers that people encounter.” Shogren is the lead author of the Self-Determination Inventory Systemopens in new window (SDIS), which includes a version tailored for adults that can be completed in about 15 minutes—though some may require more time depending on their cognitive difficulties, she said. In preliminary work, Shogren and colleagues have validated the use of the tool in adults with and without disabilities (Intellectual and Developmental Disabilitiesopens in new window, Vol. 59, No. 1, 2021).

Using the SDIS doesn’t require specialized expertise, and it can be combined with other assessment tools, Shogren said. “It leads to a profile of where the person is feeling that they are, in terms of their ability to make decisions and to identify their goals,” she said.

By late summer, Day said that her son’s anxiety had eased somewhat, which she attributed to the therapy as well as medication prescribed by his psychiatrist.

“They’ve helped him slowly start to get back to where he used to be,” she said. “I still think we’ve got a long way to go. But it’s at least better than it was.”