Intellectual Disability Psychiatry: A Primer for PCPs

Reprinted from the summer issue of The Ohio Family Physician

By: Laura Sorg, MD, FAAFP, Medical Director, Ohio Department of Developmental Disabilities; and Julie Gentile, MD, MBA, Professor and Chair of Psychiatry, Director, Division of Intellectual Disabilities

“Mom, I can’t keep my body from wiggling! Can we talk to the doctor about medicine?”fake text for space fake t

This was the statement from my autistic son, Jake. He had tried Karate class for the first time. Though his mind was telling him to stand still, his attention deficit hyperactivity disorder (ADHD) wouldn’t allow his body to cooperate. I took a deep breath, knowing I should listen to him advocate for himself, and made the appointment.

Though Jake has a developmental disability (DD) and not an intellectual disability (ID), his words and diagnoses are not uncommon amongst those with DD and/or ID. Jake has several dual diagnoses including autism spectrum disorder, ADHD, anxiety, and temporal lobe epilepsy.

In ID, dual diagnoses refer to a person with an intellectual/developmental disability who concurrently experience a mental health condition. While the exact prevalence is unknown, most professionals accept that 35% of people with ID also experience mental health challenges.¹ 

The 2010 census found just over 11.5 million people residing in Ohio. Approximately 1.5% will have an ID and one-third of these people will have a co-occurring mental illness. This means that there are approximately 172,500 children and adults with IDs living in Ohio today. Approximately one-third of them, or 57,000, will have a co-occurring mental illness. Most people with DD/ID reside with families and/or live in their communities.¹

Family physicians are often the primary physician support for people with DD/ID. And with the shortage of psychiatrists (both adult and child/adolescent), family physicians are increasingly important in managing psychotropic medications and dual diagnoses now more than ever.

So, what exactly is ID?
The American Psychiatric Association defines ID as a disorder with onset occurring in childhood prior to 18 years old that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains. Intellectual abilities are measured through an IQ test; however, the severity of an ID is categorized by adaptive scores – mild, moderate, severe, and profound. Adaptive scores assess abilities related to activities of daily living, such as dressing, personal hygiene, feeding, communicating, etc.²

• Is attributable to a mental or physical impairment or combination of mental and physical impairments
• Is manifested before the person attains the age of 22 years
• Is likely to continue indefinitely
• Results in a substantial functional limitations in three or more of the following areas of major life activity:

1. 1. Self-care
   2. Receptive and expressive language
   3. Learning
   4. Mobility
   5. Self-direction
   6. Capacity for independent living
   7. Economic self-sufficiency

• Reflects the person’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.

What mental health conditions are most common in those with DD/ID?
It is important to note that, like everyone else, people with ID/DD experience the full range of human emotions and conditions, as well as the full spectrum of mental health conditions.

• Depression
• Anxiety
• Obsessive-compulsive and related disorders
• Trauma
• Dissociative disorders
• Schizophrenia
• Bipolar disorder.

When a person has cognitive and communication challenges, physicians may find diagnosis and treatment challenging.⁴ Many may not recognize the availability of resources to help accurately diagnose and treat people with ID. Patients with dual diagnoses often present to family physicians with behavioral changes, and because patients with ID often have communication difficulties, they may have undiagnosed medical conditions that affect their behavior. Characteristics of ID may confound the usual procedures for physician assessment and treatment.

Interviews of patients with ID can be complicated by challenges in verbal communication skills. By speaking in sentences similar in length to that of the patient and collecting collateral data from reliable sources, one can yield a wealth of information and develop a rapport with the patient.

The use of the biopsychosocial formulation is key to determining the etiology of behavior. Patients with ID often function at higher levels when accurately diagnosed, psychotropic medications are prescribed following best practices, medical conditions are appropriately treated, and when they have access to a full range of mental health treatments suitable to their developmental framework.

Best practices and evidence-based medicine principles formulated for the general population are recommended when there are no unique guidelines available for people with ID. Overcoming communication barriers and connecting with a person with ID is not only rewarding, but should be the standard of care.

Some say that people with ID are the most vulnerable in our society, but they are also the strongest and most resilient among us.

What resources are available for family physicians regarding ID/DD psychiatry?
There are multiple resources available to help family physicians care for people with ID. Resources have been developed in cooperation with the Ohio Department of Developmental Disabilities and are located at dodd.ohio.gov.⁵

References available on the Ohio Academy of Family Physicians website.