Intellectual Developmental Disorder and Mental Health

Research shows that children with intellectual developmental disorder have a higher incidence of mental health problems than other kids, but they are less likely to be diagnosed and treated for them.

As many as 50 percent of kids with intellectual developmental disorder (often referred to as intellectual disability, intellectual and developmental disability, or IDD)  are estimated to also have a mental health disorder, with anxiety and depression being the most common. OCD, ADHD, conduct disorders, psychotic disorders, and trauma disorders also occur.

A child with IDD has challenges in intellectual functioning that affects their ability to think and learn. They also have challenges with what are called “adaptive skills,” which are skills used in everyday living. Within the category of adaptive skills, there are three types of skills:

• Conceptual, which includes things like language, money, time and number concepts, and self-direction
• Social, which involves interpersonal skills
• Practical, which includes personal care like getting dressed and bathing

Some children are born with IDD, including kids with Down syndrome and some kids with autism. Others may have IDD as a result of a brain injury or epilepsy.    

Researchers note that the risk of developing mental health disorders may be increased by some genetic conditions, as well as abnormalities in brain development, associated with IDD. Another factor may be that reduced cognitive abilities can make it harder for children with IDD to cope with stressful events, resulting in emotional problems. Bullying can also be a factor, especially in the teen years. Additionally, children with intellectual disability have been found to experience more adverse life events than children without it, which can trigger depression, anxiety, and other mood disorders.

“Kids with IDD are at greater risk for safety issues, including sexual abuse, because they often aren’t able to advocate for themselves,” says Jenna Lebersfeld, PhD, a pediatric neuropsychologist and licensed clinical psychologist who works at Special Olympics International. “They’re a lot more susceptible to being taken advantage of by other people.”

There are a number of reasons why mental health disorders often go undiagnosed in children with intellectual disability, including a shortage of mental health professionals trained to work with them. “There are so few psychologists and therapists who have expertise in working with this population that the waiting lists for getting any kind of diagnosis or treatment are quite long,” Dr. Lebersfeld explains. “The research is showing that these populations have a higher need, but there aren’t enough people out there that can help them.”

Another barrier to getting accurate diagnosis and effective care stems from stereotypes about kids with intellectual disability that can mask mental health challenges they may be experiencing. Behavior that is a symptom of emotional distress is often misattributed to their disability.

The most common example is challenging behaviors — outbursts, anger, or violence. Students with IDD who act out in school are often labeled as having a “behavior problem” without any effort to explore what might be causing the behavior. “They become isolated, medicated, and maybe even restrained, and that’s the treatment,” notes Dr. Lebersfeld. “There isn’t a referral to a mental health clinician to ask, ‘What is the underlying cause of this?’”

Diagnoses may also be missed in kids with IDD because they lack the communication skills to report what they’re feeling. School staff and pediatricians may not have enough training to identify symptoms of mental health disorders in these children.

One factor that contributes to anxiety and depression in children and teens with IDD is the social challenges they often face. They may miss social cues, act inappropriately, or be less mature than other kids. “Maybe you made friends in middle school, but now you go to high school and your friends are maturing faster than you,” Dr. Lebersfeld explains. “You’re still into Barbies or playing with toys, and your friends don’t want to do that anymore. They’ve left you behind.” These experiences can lead to loneliness, isolation, and low self-esteem.

Academic pressure can result in frustration in these children — “Why are things so much easier for everyone else?” Difficulty in expressing thoughts and emotions can also be frustrating, and bullying and stigmatizing can contribute to emotional distress.

“When kids are struggling socially or emotionally, the next step should be to go to therapy or a support group to be able to talk about it,” Dr. Lebersfeld says. “But with these kids, it’s treated as the normal course of life. There’s often no treatment, no recommendations for support.”

ADHD is difficult to diagnose in children with IDD, Dr. Lebersfeld explains. ADHD is normally diagnosed by measuring a child’s attention and executive functioning and comparing them to other kids their age. But kids with IDD already have abilities that are significantly lower than other children their age, including attention and executive functioning. “I don’t believe I’ve evaluated a child with intellectual disability whose attention was age-appropriate,” notes Dr. Lebersfeld. “If their cognitive skills are lower, their attention is usually also lower.”

To diagnose ADHD, the child’s attention would have to be lower than expected given the level of their broader cognitive functioning, she explains.  “For example, if somebody nine years old is functioning at the level of the seven-year-old — but their attention is the level of a five-year-old — then they might qualify for the diagnosis.”

She adds that even without an ADHD diagnosis, a child with IDD who has attention problems could benefit from cognitive therapy. Whether or not ADHD medication would be helpful depends on the circumstances of the child.

Children with IDD may struggle with overwhelming emotions and develop mood disorders because they have not acquired age-appropriate coping skills, such as knowing how to recognize their emotions and what’s going on in their bodies, and how to calm themselves down.

Dr. Lebersfeld notes that kids with IDD can be taught coping skills. “They may need additional support and repetition, but there are coping strategies that you can teach them.”

Historically, treatment for children with both IDD and a mental health disorder has focused on medication, including antipsychotics and antidepressants, to reduce problem behavior.

These kids have often been excluded from cognitive behavior therapies, and have not had the opportunity to learn positive and healthy coping strategies. Instead, therapy often has a strictly behavioral approach, such as parent training, in which parents make changes in their interactions with the child to help them improve their behavior. One parent-training program, Stepping Stones Triple P, was specifically designed to work with parents of children with intellectual and physical disabilities to promote positive behavior.

Until recently, it was assumed that children with IDD weren’t capable of participating in cognitive behavioral therapy (CBT) themselves. But recent research has shown that CBT therapies adapted for kids with mild-to-moderate intellectual disability can be effective for problems such as anxiety and depression.

Modifications for this population include shortening therapy sessions, using simple sentences, dividing tasks into smaller units, positively reinforcing attention, and minimizing distractions. Kids have been found to benefit from repeated practice with different scenarios to help them consolidate skills in each step. Parents are engaged to assist with homework practice.

One program called Fearless Me! (developed by the University of Technology in Sydney, Australia) is designed for kids with intellectual disability who have mood and anxiety disorders. It involves both in-person sessions with a therapist and an online program for practicing skills at home, with parental assistance. Children learn to cope with worries, identify thoughts and feelings, face fears, and use relaxation techniques.

There is also some early evidence that so-called third-wave therapies like dialectical behavior therapy (DBT), which combines CBT with other elements like mindfulness, can be adapted for people with IDD.

More research is needed, but advocates point out that kids with IDD deserve early diagnosis and intervention for mental health challenges to avoid being defined and limited by behavior that is misunderstood. Identifying and treating sources of emotional distress can improve not only their quality of life, but also their long-term potential for things like academic performance, community inclusion, and integration with peers.

“There is increased awareness of the fact that people with intellectual disability are at higher risk for mental health challenges,” notes Dr. Lebersfeld. “Now, we need to get more pediatricians and primary care doctors to refer kids who are struggling with mental health challenges to clinicians in their community who can help them. We also need more mental health clinicians with intellectual disability experience.”

One group focusing on the mental health of children with IDD is the Special Olympics, which has launched a program called Strong Minds to support mental wellness and healthy coping skills in their athletes. Strong Minds is developing mental health screening measures to identify athletes at risk for mental health concerns, and a referral system to connect them with community-based healthcare professionals.